2015 White House Conference on Aging

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Policy Briefs

Nora Super and others at Listening Sessions 2014

24. April 2015 10:21
by WHCOA Staff
73 Comments

Long-Term Services and Supports Policy Brief

24. April 2015 10:21 by WHCOA Staff | 73 Comments

Older man accessing transportation from Ride to Wellness program
Older man accessing transportation from Ride to Wellness program

Long-Term Services and Supports

Despite efforts to stay healthy and prevent disease, many older adults will eventually develop some degree of limitations and need additional paid or unpaid help with basic daily living activities. Long-term services and supports help older adults and people with disabilities accomplish everyday tasks such as bathing, dressing, preparing a meal, or managing money. These services include health and social services that may be needed to maximize the independence and well-being of an individual.  Individuals of all ages may have functional limitations, but these limitations are most prevalent among adults age 65 and older. 

In many cases, assistance with just a few of these tasks can help older adults remain independent in their own home and communities, which a majority of older Americans prefer. Through the Older Americans Act and the Aging Network, social services and personalized information on the services and supports available in each community enhances opportunities for older adults to live independently.  Overwhelmingly, long term services and supports are provided by family and friends, but may also be provided by professional home care workers, or direct care workers in settings such as assisted living or nursing facilities as well. 

Who Uses Long-Term Services and Supports?

Approximately 20 percent (7.7 million) of older Americans receive assistance with their care needs.   Most receive services or supports from family, friends, or professional workers in their homes and communities. An estimated 1.1 million older adults receive services in a nursing home, either as a long-stay resident or for short-stay post-hospital rehabilitation.   The likelihood of needing assistance increases sharply with age: 11 percent of adults aged 65-69 have a functional limitation, compared to 62 percent of the population 90 and older.   Women are more likely than men to need long-term services and supports primarily because they tend to live longer.  Individuals with Alzheimer’s disease or other dementia frequently need more of these services and supports than those older adults who have physical disabilities.

Informal Caregivers

Informal caregivers are often called the backbone of long-term services and supports. Family members or friends, who are not paid for their assistance, provide the majority of long-term services and support. Almost two-thirds of individuals age 65 and older rely exclusively on informal care for their personal care needs. An additional 30 percent use a mix of paid and unpaid care.

Caregivers are more likely to be female (62 percent) and middle-aged (50 percent are 45-64).  They are often the older adult’s daughter (29.3 percent) or spouse (21.2 percent), although sons (18.3 percent) and other relatives (22.3 percent) also commonly serve as caregivers. Caregivers provide an average of 75 hours of support per month, but there is great variability depending on the number of caregivers in the family and the older person’s level of need.  As the aging population increases, however, it will be increasingly difficult for family caregivers to meet this demand alone. 

Most caregivers describe substantial positive aspects to caregiving, such as feeling closer to their loved one and reassurance that they are well cared for. However, caregiver strain is of concern as 15 percent of caregivers report significant financial or physical difficulties with caregiving, and more than a quarter experience significant emotional difficulties.  Caregiver stress is associated with poorer health for the caregiver and greater likelihood that the care recipient will enter a nursing home. Supporting caregivers decreases caregiver strain and improves the caregiving experience. The Administration for Community Living within the Department of Health and Human Services provides resources for caregivers through the National Family Caregiver Support Program, including information to caregivers about available services, counseling, and respite care. This program provided supports to more than one million caregivers in 2013.  The US Department of Veterans Affairs (VA) also provides resources to caregivers of veterans through its VA Caregiver Support Program. VA offers a variety of training and education programs on-line and in person and connects caregivers to one another through its caregiver peer support programs and caregiver support coordinators.

One of the most promising developments in helping older Americans remain in their homes and communities as they age is the growth of publicly financed consumer-directed services, a model that enables individuals who need long-term services and supports to hire informal caregivers or directly hire home care workers.   Evaluations of consumer-directed services show that older adults and their caregivers report high levels of satisfaction.   This model has the added benefit of easing the financial strain on families.  States provide consumer-directed care options through their Medicaid programs.  The Affordable Care Act expanded the availability of consumer-directed services by providing states with the option to adopt Community First Choice, in which beneficiaries may choose to self-direct their services.   In addition, in some states, the Veterans Health Administration and the Aging Network work together to allow veterans to pay informal caregivers to provide their long-term services and supports. 

The President’s 2016 Budget continues to emphasize the importance of caregiver supports, with nearly $50 million in new funding for aging programs that provide critical help and supports to older adults and their caregivers, such as respite and transportation assistance. The President’s Budget also provides $15 million to a new Family Support Initiative focused on assisting family members supporting older adults and/or individuals with disabilities. 

Formal Services and Supports

Paid, or formal, assistance may be provided in a number of settings, including:

  • At-home 
  • Adult day support centers allow for the older adult to live at home but receive some assistance such as personal care, social integration, and companionship in a group setting, usually during the work week. 
  • Residential care communities, such as assisted living and adult foster care, provide 24-hour care and supervision along with assistance with activities of daily living, but generally, not the skilled nursing care found in most nursing homes. 
  • Nursing homes or nursing facilities provide nursing, medical oversight, personal care, and other services.
Research has shown that delivering formal services and supports in home and community-based programs can improve the quality of care individuals receive as well as reduce health care costs.  States are shifting Medicaid spending from institutional long-term services and supports to home- and community-based services, a process known as “rebalancing.”  The Affordable Care Act is helping to support this effort through the Balancing Incentives Program which will have invested nearly $3 billion in 21 states by September 2015. Participating states may use the Balancing Incentive Program funds to increase access to home and community based services.   Research indicates that states that have invested in rebalancing have saved money in their long-term services and supports spending compared to the amount that they would have spent had they not invested in rebalancing.

Direct Care Workers

Direct care workers include nursing assistants, home health aides, and personal care aides who deliver hands-on long-term services and supports. In 2012, the direct care workforce conservatively totaled more than 4 million workers in the United States. A growing demand for direct care workers is expected, which raises issues of recruiting and retaining the direct care workforce.  

Direct care is a demanding profession with low wages, long hours, and limited benefits. In 2013, the Obama Administration took an important step forward to address this issue for most of the nearly two million direct care workers who provide at-home services.  Specifically, the Department of Labor issued a final regulation extending minimum wage and overtime protections to home care workers who, unlike workers who provide services in nursing homes and other residential facilities, lacked such protection. The Department has been committed to assisting employers in implementing the regulation in a manner that affords crucial wage protections to these workers who provide long-term services and supports.  These wage protections and other measures that enhance the labor standards for direct care workers are critical to efforts to recruit and retain a sufficient number into the profession to keep pace with the growing need. Direct care workers, like other low wage workers are likely to benefit from greater access to health insurance through the Affordable Care Act. 

While states determine direct care worker training requirements, there are efforts underway by the federal government to identify the core competencies needed by direct care workers.   Funded by an award from the CMS Center for Medicare and Medicaid Innovations, the California Center for Long-Term Care Education focuses on training personal home care aides in core competencies that will enable them to assume new roles with respect to caring for some of the sickest and most costly Medicare and Medicaid enrollees. These core competencies include being health monitors, coaches, communicators, and navigators. The Personal and Home Care Aide State Training Program, authorized by the Affordable Care Act, supported six states that developed, implemented, and evaluated curricula and certification programs. This program trained qualified direct care workers on core competencies including infection control, safety and emergency training, consumer rights, ethics, and confidentiality, and other important topics.  Other innovative models of training include apprenticeship programs and other career pathway approaches.  

Access to Information and Services

When older adults and their families need additional supports, they may need help understanding their options. Individuals and their families may turn to many places for information, including friends, a geriatric case manager, hospital discharge planners, or providers. With support from the Older Americans Act, area agencies on aging (AAAs), and tribal entities provide personalized information on the services and supports available in each community and assist in decision making (AAA, tribal, and other service information is available through the Eldercare Locator.)  People selecting a nursing facility or home health care agency can get information on the quality of the services on the Center for Medicare and Medicaid Services’ Nursing Home Compare or Home Health Compare websites. 

To make it easier for consumers to learn about and quickly access services and supports, the Department of Health and Human Services collaborates with the Veterans Health Administration to support states in their development of “No Wrong Door” systems, which serve as a one-stop shop for those seeking long-term services and supports. Through an initiative called Aging and Disability Resource Centers  (ADRCs), states develop a single statewide system of access to long-term services and supports for all populations. 

The Department of Health and Human Services is also funding a number of initiatives designed to help older adults with complex care needs better navigate an often complex web of providers and benefits. Programs such as the dual eligible financial alignment initiatives, serve low-income older adults with significant health care needs by streamlining benefits and providing more seamless connections between their providers.  

Financing

The primary source of long-term services and supports is unpaid care provided by friends and family valued at $234 billion in 2011.  The largest source of long-term services and supports expenditures is Medicaid, funded at both state and federal levels, and estimated at $131.4 billion. Other sources of expenditures are out-of pocket spending by individuals receiving services and their families (estimated at $45.5 billion) and other private sources ($24.4 billion).


Medicare: More than 90 percent of older Americans have health insurance coverage through Medicare, but one of the common misconceptions is that Medicare will finance long-term services and supports. Medicare covers short-term skilled nursing services following hospitalizations, known as post-acute care. Medicare also covers limited hours of home health services, without requiring a prior hospital stay, under certain conditions.

Medicaid: Medicaid provides coverage for health care and long-term services and supports for individuals with limited financial resources. Most individuals who are eligible for Medicaid have low income and few assets. States are required to make nursing home care available under their Medicaid programs. However, Medicaid coverage of home- and community-based services is optional, and states may limit the number and type of beneficiaries eligible for these services, as well as the range of services provided.  As a result, some states have lengthy waiting times before qualified individuals are able to receive home- and community-based services. The Affordable Care Act took steps to expand access to these services under Medicaid through new options such as the Balancing Incentives Program and Community First Choice, which are described below.

Aging Network: With funding support through the Older Americans Act, the Aging Network (a nationwide network of state units on aging, AAAs, tribal entities, and community-based providers) delivers social services to support older Americans, including information and referral on the services and supports available in each community, home- and community-based services, caregiver supports such as respite and support groups, and congregate and home-delivered nutrition programs. 

Private spending: The main private source used to finance long-term services and support is personal out-of-pocket spending. Depending on the setting and type of care, out-of-pocket spending can be significant. Nursing homes rates average $90,520 per year for a single occupancy room and $81,030 per person, double occupancy.  Assisted living costs average $42,600 annually, but this may not cover all the direct care service costs. Home care, for 8 hours per day, costs an average of $58,400 annually.  

Today, long-term care insurance policies are primarily purchased by middle-aged and older adults who are assessed by insurance companies as having less health risk and have higher than average incomes. There are approximately 7.3 million long-term care policies currently in force in the United States  and payments by insurance accounts for 3.3 percent of spending on long-term care annually. 

Planning for Long-Term Services and Supports

In spite of the large number of people who will need long-term services and supports and the potential threat to retirement security that the high costs represent, most Americans are unaware of how much this care costs or who routinely pays for such services.  In 2005, a person turning age 65 had a 69 percent risk of needing long-term services and supports for an average of three years during the remainder of their lifetime.  Only 58 percent of men turning 65 in 2005 had an expected long-term services and supports need, compared to 79 percent of women. One in ten older Americans will need more than $100,000 to cover their long-term services and supports costs.   

The role of public programs such as Medicare and Medicaid in financing long-term services and supports is commonly misunderstood. While Medicaid is the largest payer of long-term services and supports, roughly a third of pre-retirees incorrectly assume Medicare pays the most, according to recent survey results.   Private options (including long-term care insurance, whole life insurance or life insurance riders, reverse equity mortgages, and annuities) are available to help some people plan ahead to pay for their future care. But there is currently no comprehensive long-term care financing program available to all older adults. 

Consumer education and outreach on preparing for long-term services and supports is needed. To raise awareness about the prospect of needing long-term services and supports and to encourage baby boomers to begin planning for it, the Department of Health and Human Services (at www.longtermcare.gov) and the Veterans Health Administration (at www.va.gov/GERIATRICS/Guide/LongTermCare) provide information on planning, decision-making, and long-term services and supports. 

Aging services technologies helps address a number of key care issues including falls prevention and detection, chronic disease management, medication management, and cognitive, sensory, and mobility impairments.  These technologies hold promise for assisting older adults, individuals with disabilities of all ages living in the community, as well as their informal and formal providers of services and supports.  However, there are important issues with the development, adoption, and use of aging services technologies and potential lessons that can be learned from other developed nations where these technologies have been implemented more widely.

Improving Access to Home- and Community-Based Services

In recent years, the Administration has expanded efforts to ensure that older adults and individuals with disabilities have access to person-centered services in community settings.  For example, the Money Follows the Person Rebalancing demonstration helps states rebalance their Medicaid long-term services and supports systems and provides opportunities for older Americans and people with disabilities to transition back to the community from institutions. The Affordable Care Act extended and expanded this program.  As of December 2013, more than 40,500 individuals with disabilities and chronic conditions have transitioned to the community through the program.   

The Affordable Care Act also provided additional opportunities to make home- and community-based services options more available. Through the Balancing Incentives Program, for example, 18 states have made structural changes to their home- and community-based services systems and are providing new or expanded services in community settings.   Through the Community First Choice Program, an enhanced federal Medicaid match incentivizes states to provide more home- and community-based attendant services. 

Under the Obama Administration, the Department of Justice renewed its commitment to enforcement of the Supreme Court’s landmark decision in Olmstead v. L.C., which recognized the right of individuals with disabilities to access care for their needs in their own homes and communities instead of in institutional settings.    Through comprehensive Olmstead settlement agreements with the Department of Justice, in addition to settlements in private litigation and to voluntary compliance efforts, states have expanded access to home- and community-based services settings throughout the country.

The President’s 2016 Budget includes additional legislative proposals to make it easier for states to cover home- and community-based services through Medicaid. These include proposals for expanding eligibility for home- and community based services and a new pilot program that will simplify Medicaid home- and community based services so that states can more efficiently cover these services.  The President’s Budget also includes an increase in funding to Centers for Independent Living to help individuals transition from nursing homes to the community or to allow them to remain at home rather than move into facilities. 

Discussion Questions

The 2015 White House Conference on Aging aims to foster a national conversation, and the questions listed below are designed to stimulate dialogue on long-term services and supports issues.  The White House Conference on Aging will use the feedback received to continue to help shape outcomes of the 2015 White House Conference on Aging. Please provide your thoughts and ideas on our website. All comments will be displayed in the public conversation area of the White House Conference on Aging website. 

  • What supports will help caregivers continue to provide care while maintaining their own health and well-being?
  • What assistance do older adults and families need when making decisions about long-term service and supports?
  • What could be done to ensure sufficient numbers of highly qualified direct care workers for now and the future?
  • What could be done to ensure an adequate workforce with the knowledge and skills needed support an increasing population of older Americans with chronic conditions and/or functional limitations?
  • Are there current long-term services and supports programs or policies you think are the most or least effective or potentially duplicative?
  • How can we better address the costs and increasing need for long-term services and supports?
  • How can we harness technology to assist individuals with their long-term service and support needs?
For questions about the policy briefs, please contact policy@whaging.gov.

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Thank you for your interest in commenting on the Long-Term Services and Supports Policy Brief. At this time, we are no longer accepting comments. If you are still interested in sharing your thoughts, please e-mail them to info@whaging.gov.

Comments (73) -

Bill

4/24/2015 2:05:48 PM

I would like to be kept updated on other comments.  Thank you.

Catherine Emmett

Empath Health

4/24/2015 3:04:02 PM

We should expand the PACE program to every state and community.

Dianna Garrett

5/6/2015 6:31:48 PM

Agreed! PACE is amazing. Great customer satisfaction and health outcomes.

Michelle Boasten

The 86 Percent

4/24/2015 5:54:14 PM

Are you part of the 86%...

Long term service and supports (LTSS) are a reality for all 100% of us.  Paying for LTSS is an issue for 86% of us.  This is because 8% of us will qualify for Medicaid which will have some kind of LTSS benefit; 3% of us are wealthy enough that you  can afford to pay privately for your LTSS; 3% of us were lucky enough to pay for the “right” type of Long Term Care insurance that actually pays for adequate LTSS for 5 years.

What is most important for each American to know is if you are part of the 8%, part of the wealthy 3% & 3% or if you fall into the 86%.  If you fall into the 86%, you do not have enough money to pay for the full need of LTSS and you will have to rely on family, volunteers and yourself.  

Today, if you are part of the 86%, the resources for aging are a bunch of brochures, pamphlets, information and words.  As the excellent brief points out, Medicare does NOT pay for LTSS and there is no LTC plan in place from the government.  If you are part of the 8% or one of the 3% groups, your resources are actual help because direct care workers and the people that manage them cost a lot of money.  

I think most of us are aware that caregiving is a huge responsibility and many women (especially) expect that they will be caregivers in some capacity.  What we are not counting on is the impact of the demographic shift which will make nearly all of us caregivers to the Baby Boomers.  "Get ready to serve - ask not what your country can do for you, instead ask what you can do for your senior neighbor."  

Q:  What supports will help caregivers continue to provide care while maintaining their own health and well-being?

A:  Future adult-child caregivers have to prepare early by introducing others to the care needs.  Do not keep your care needs silent.  Speak up!  Your parent is likely to say... "I don't want anybody helping me, but you."  That is a mistake!  Doing it all yourself is a formula for guilt and burnout.  Even to a small extent, use volunteer help and small paid supports early on so that your parents and grandparents can get used to others helping them instead of it just being you.  If you need to, simply parent swap.  I'll help your mom and you help mine.  That will get us all in the right mindset for accepting the help of the community.  

Q:  What assistance do older adults and families need when making decisions about long-term service and supports?

A:  The assistance they want is financial and/or actual caregiving help.  So please cut to the chase and tell the 86% that they are part of the 86%.  Don't give them more brochures and pamphlets.  They need help paying for help or they need actual volunteer caregiving help.  Brochures and pamphlets are kind of insulting.  If you can hand them a brochure, why not volunteer to sit with their loved one for a few hours of respite.  This is a time of action.  Imagine if you went to a restaurant and the only thing they provided was the menu.  How frustrating it would be do not be able to put in an order and have food come to the table.  That's what it is like when the 86% turn to these "caregiving" organizations.  Lots of words, no real caregiving help.  We have to all volunteer and help.  

Q:  What could be done to ensure sufficient numbers of highly qualified direct care workers for now and the future?

A:  The truth is that the direct care workforce work for the 8% or the 3% and the other 3%.  If you are part of the 86% you cannot afford to pay the home care agency $21/hour for the highly qualified direct care worker.  If you hire the highly qualified direct care worker on your own, you will still pay $15/hour.  You can get the lesser qualified direct care worker for less, perhaps $10/hour.  Direct care work is hard physically, mentally and emotionally.  Many people are not attracted to this work.  That's the reality.  It would be a good idea to start recruiting direct care workers from outside the United States. Will America make that choice?  The sooner we start doing this the better prepared we will be.

Q:  What could be done to ensure an adequate workforce with the knowledge and skills needed to support an increasing population of older Americans with chronic conditions and/or functional limitations?

A:  Chronic conditions are not the same as functional limitations... In regard to the chronic conditions, we have all been trained to be overly dependent upon the "medical professionals" for actual hands-on service.  We have to stop this dependency right away and become self-carers with some accountability put in place.  We have to use the physicians and nurses as health coaches, not as hands on care providers.  With tools like Physician's Health Call, you will learn that your first line of defense against having a chronic condition is yourself.  You (and your family) have to get the knowledge and skills needed to support you, especially if you are part of the 86%.  If you have long-term functional limitations you are likely to qualify for Medicaid because if you can't work and earn, you will likely be poor enough to qualify for Medicaid. Medicaid will pay for a direct care worker to help you at home. The hours may be low, but at least there's something.

Q:  Are there current long-term services and supports programs or policies you think are the most or least effective or potentially duplicative?

A:  Yes.  Everyone is tripping over themselves with the same brochure, pamphlet and information.  I am impressed and overwhelmed with how much of the same information is out there.  The current Area Agency on Aging offices are there for the 8% on Medicaid programs.  If you are part of the 86%, they can only give you another brochure or pamphlet that you can get free online.  What we need is for the AAA to start doing free classes for the direct care workforce.  Why can't they do CPR free of charge or set up care labs for anyone who wants to learn the physical work of caregiving. All the rest of the training can be handled online.  Why can't they be a clearinghouse for background checks for the paid and volunteer direct care workforce?  Giving out more pamphlets and brochures is duplicative, but meaningfully contributing to the direct care workforce helps to ensure an adequate workforce with the knowledge and skills needed to support an increasing population of older Americans.

Q:  How can we better address the costs and increasing need for long-term services and supports?

A:  The cost of LTSS is all tied up in the wage of the direct care workforce.  The rest of the cost is associated with managing the direct care workforce.  The highly regulated state and federal rules make care delivery more expensive by requiring lots of office workers.  These things cannot be changed.  We can all volunteer doing the tasks that are less physical, yet are essential to older Americans.  Please give your contributions and philanthropy support to organizations that will actually send out hand-on real caregiving help.  Donate to organizations that give care, not more information, brochures and pamphlets.  Give to the care because there is no cure for aging.

Q:  How can we harness technology to assist individuals with their long-term service and support needs?

A:  Real care is high touch and tends to be low tech.  The higher the tech, the higher the cost and the lower the touch.  Caregiving is high touch.  We can use technology to communicate quicker, monitor from a distance, aggregate data and facilitate information.  All these high tech gadgets have a place, but they cannot work alone.  Someone has to be at the end of the high tech with a high touch if you want the care to be meaningful and real.

Judy Hall

6/27/2015 3:40:47 PM

As I read this I was impressed by all the knowledgeable information and suggestions included here! Michelle Boasten, this doesn't say if you are a professional person in the field, or just someone who really cares about finding the right information and applying it to this subject? But whichever the case may be, I feel all that you have written here should be shared with many who may not have access to this page.

I would love to be able to share your writings on FaceBook, but only 'your' comments! I don't see a FB share link and would not share without your permission.

Also, I don't care to share the whole list of comments although many are good, many of them are as, you say, organizations that give information, brochures and pamphlets. I could put a link to this page with a note "for more info" because the article does explain much, but I really want to share the information you have addressed here.

I am blessed with low income (my age, 71, is the "only" place where low income can be called a blessing) and qualify for more than most of my age. I do have to skimp on healthy food, but over the years I have learned to make a dollar stretch and my needs are few.

Thank you for the wonderful information and statistics!

Roy Afflerbach

National Adult Day Services Association (NADSA)

4/25/2015 7:47:58 PM

In addition to Adult Day support centers, as described in the brief, there are Adult Day Health Centers (ADHC) which provide the same medical quality care an individual can receive in a nursing home for approximately 40% of the cost of a nursing home. Medicaid and the VA recognize the value of ADHC, as has the private long-term care insurance marketplace (see Genworth annual reports). Unfortunately, Medicare does not. To have seamless post acute care of nursing home quality, Medicare must be amended to allow ADHC as a home and community based option to nursing home placement.

Janet Snyder

Society of Military Widows

4/25/2015 8:33:21 PM

Our military widows have limited income.  Many are concerned that they will be unable to afford long term care.  None of us want to be a burden to our families.  Most of us are concentrating on living a healthy lifestyle, which includes nutritious food, exercise, and participating in social activities with family and friends.

Janet Snyder

Society of Military Widows

4/26/2015 8:27:36 AM

Our nation's military widows have limited income.  There should be more inexpensive alternatives to long-term care.  None of us want to be a burden to our children.  Many of us have been caregivers to our military spouses, before they passed.  Regular respite and social activities are most important.  These should be available at a low cost.

Kay Henry

4/27/2015 9:41:14 AM

86%

It is true that 86% of  us do not have the financial resources to pay for our Long Term Care needs.  There is a community program that is already in place and have been for years to help with this, but is only funded by Medicaid.  So, this means that only 8% outside of the 86%, will be able to access this program, if they know about it.  This program is Adult Medical Day Service.

This program provides transportation; most nursing services to include caregiving,  medication administration and oversight; g-tube; wound care and all other orders that the primary care physician may need for that participant.  The program also takes the participants to all  their medical appointments; encourage them to participate in activities; provides breakfast lunch and snack as well as provides physical therapy and other therapies as needed.  These are the basic services already being provided.

There is such an awareness for saving money for the Medicare program, but very little attention has gone into this program that can actually work directly with the hospitals to lower re-admissions dramatically.  All of these services are provided for each participant for a daily fee that is less than $100 per day.   All other costs from Nursing Home and Home Health Agency are much more expensive, and are not as all inclusive as the Adult Medical Day Service Program.

If Medicare really wants to lower its bleeding financially,  thought should be given to making this program accessible to ALL medicare recipients!  Consider this program as a MUST after hospitalization for the chronic diagnoses that are financially expensive to Medicare and Medicaid.  Include this program in the discharge summary for those reoccurring costly visits to the ER, and maybe then the programs that are presently in place may begin to approach the possibility of being utilized efficiently.

We can use technology to aid in gathering information to monitor just how effective this can be. Computerized data systems can be used between the Medical Day and the hospitals; with reports generated for Medicare to monitor the progress.  Real care giving and thoughts given to include this program, can be very effective in lowering costs and will also allow people to remain in the community while being taken care of.

I challenge the powers that be to really consider this community program for Medicare and show an effective, economical and long term care plan to include the 86% of us.

Roy Afflerbach

National Adult Day Services Association (NADSA)

4/27/2015 10:24:41 AM

The paper notes the application of basic Adult Day Service centers as one of the four examples of settings for LTSS. It also should be noted that Adult Day Health Centers (ADHC) are capable of providing the same medical quality services to consumers as they would receive in a nursing home. Additionally, ADHC are able to provide these equivalent services for approximately 40% of the cost of a nursing home admission. Medicaid, the Veterans Administratioin, and the PACE programs recognize the value of ADHC but Medicare does not. In order to provide a smooth coordinated care transition from acute care to ADHC as a home and community based service, without an intermediary stop in a nursing home, Medicare must be amended to permit the consumer (and the consumer's family) to choose direct referral to ADHC as an option to nursing home admission.

Lois Arsenault

Caring Connection Adult Day Health Center

4/27/2015 12:01:46 PM

As we age, most of us will need some type of support to remain in our communities, where we hope to find the best quality of life experience. Without vast financial resources and/or a large family whose members are able to provide sufficient support without burnout, "aging in place" is a myth at this time.
I am the director of an adult day center in CT. We are a medical model and provide clinical oversight for the clients who visit us daily. Adult day services are cost effective community based services, often underused,  that offer meaningful engagement in the community, caregiver respite, and a safe welcoming environment for individuals who may otherwise find themselves isolated at home. When funding home and community based services, adult day centers should be considered as one of the most critical components to include in the care planning process.

Doris

The Wright's Center, Inc.

4/27/2015 12:14:12 PM

Adult Day Health Care and Adult Day Care are both services that provide an organized program of services during the day in a community group setting for the purpose of supporting older adults and adults with disabilities' independence, and promoting social, physical, and emotional well-being.  Both services are cost effective and provide a means for families to stay together in the community longer by preventing premature institutionalization.   It is my hope that Adult Day Services will one day be recognized as a medicaid reimbursable service because of its cost effectiveness.

Tamara Berton

4/30/2015 3:55:43 PM

"Amendment 28 of the American Constitution: Congress shall make no law that applies to the citizens of the United States that does not apply equally to the Senators or Representatives, and Congress shall make no law that applies to the Senators or Representatives that does not apply equally to the citizens of the United States."

"The problems we face today exist because the people who work for a living are outnumbered by those who vote for a living."

Mary Neiman

4/30/2015 5:12:58 PM

"Amendment 28 of the American Constitution: Congress shall make no law that applies to the citizens of the United States that does not apply equally to the Senators or Representatives, and Congress shall make no law that applies to the Senators or Representatives that does not apply equally to the citizens of the United States."

"The problems we face today exist because the people who work for a living are outnumbered by those who vote for a living."

The Reverend Nancy Hauser

Adult Care of Chester County

4/30/2015 8:55:33 PM

Adult Day Care is an important part of our future.  If you look at the demographics, there is no way we can continue to see the increase in persons living with dementia and expect our current model of care to handle the magnitude of the problem we are going to see in the next decade.  We must work now to have Adult Day Care recognized as a medicaid reimbursable service.  We are all going to need it!

Lois Arsenault

Caring Connection Adult Day Health Center

5/4/2015 12:59:39 PM

Certainly, adult day services are a critical and cost effective component in the array of home and community based services available to care provide services for a frail elder who prefers to remain in the community rather than move to a skilled nursing facility. Sadly, across the country, adult day service centers are falling short of the necessary revenues to keep them viable. Funding cuts to subsidy programs only make the situation worse. So, I applaud all the initiatives described in the report for the White 2015 conference on aging. I will have more hope when I see them implemented at the state and local, grassroots levels.

Joseph Rodrigues

National Association of State Long-Term Care Ombudsman Programs

5/4/2015 4:07:51 PM

The Long-Term Care Ombudsman Program of the Older Americans Act has a person-centered approach to advocacy that we provide to consumers.  We work with the consent of and at the direction of consumers.  We determine if a complaint is resolved when consumers tell us they are satisfied.  We educate and empower consumers to engage in self-advocacy as well.  Our efforts have an impact on improving quality in long-term care.  In addition to resolving individual problems of residents, we influence legislation, policy, and regulation at state and federal levels, seeking meaningful change and improvements in the long-term care system.

Jessica Conway

Texas Ombudsman Program

5/4/2015 5:49:13 PM

The long-term care ombudsman program is a vital part of educating, empowering, and protecting older adults’ rights to live in the setting they want. Long-term care ombudsmen practice a person-centered approach to care, and work to help facilities, families, and the community understand and respect an older adult’s wishes. A long-term care ombudsman serves all residents in nursing homes and assisted living facilities, regardless of income, payer source, class, race, religion, or background. Ombudsmen have a responsibility to ground themselves in the constant fundamental question: what does the resident want? This includes decisions about moving to a less restrictive part of the nursing home, assisted living, or back into their own home; an ombudsman listens, hears, and advocates for what the resident wants.

Julie Haynes

Texas Ombudsman Program

5/6/2015 6:26:05 PM

In Texas, long-term care ombudsmen see older adults choose assisted living facilities (ALFs) because they want more privacy and independence in an apartment-like setting. The number of ALFs has grown dramatically in the last 15 years. The needs of some older adults in ALFs closely resemble the needs of residents in nursing homes. ALFs, however, have much less regulatory oversight, leaving these older adults in a vulnerable position. We need to protect older adults through proper oversight of all levels of long-term services and supports, especially assisted living.

Barbara Brandt

5/5/2015 4:48:31 PM

I am a consumer with a chronic condition progressing rapidly. I have found that in my particular area of my state it is rather difficult to get help for this condition (osteopororsis of hip and femur and now into the spine because I cannot take oral medication.  I am not searching for a general doctor who has some understanding of this disease and takes assignment for Medicare so I can afford the visits.  My last physician was for less than 6 months and her expertise was to make consults and  I had no money for those.  Meawhile, she spent $5,777.00 on laboratory work and a few visits and billed AARP who notified me. I wanted an updated bone scan.  None.  I wanted shots for osteoporosis.  None.  My teeth on my left upper part of my mouth have broken off.  I need a back brace.  I tried a Clinic that said Medicare denied shots.  I can find no record of that denial at medicare.gov.  I have never had any info on the blood work that cost thousands.  I went to the hospital lab and got the results. Seems thyroid is a problem.  Research indicates that there is surgery for this that can reverse ostoporosis.  So now I am going to BEG my son's orthopedic surgeon that got him to children's hospital for an opening in his spine years ago to help me.  I hope to find someone in another country in my state that has many resources for people my age.  My son has children under 2, a new home and has too much pressure as it is.  My idea is to sell my things, move and have no stairs.  As to the future, I try not to think about it.

Gretchen Alkema

www.TheSCANFoundation.org

5/6/2015 3:13:28 PM

Re: Addressing cost and increasing need for LTSS

Care Coordination: The Linchpin to LTSS Service Delivery

A report from California’s Medicaid Research Institute (http://bit.ly/1zC9W7N) shows that individuals covered by Medicare and Medi-Cal (California’s Medicaid program) entered the LTSS system after an emergency room visit, hospital admission, or rehabilitation stay.  Details of this comprehensive analysis shine a bright light on the merry-go-round of acute, post-acute, and long-term care services that most families experience.  Key findings include:

• LTSS use is always preceded by a rapid and substantial increase in use of health care services over many months.

• Most long-stay nursing home residents had no home- and community-based services in the months prior to admission.

• For individuals with high health care utilization, initiating LTSS was associated with reductions in the rate of health care spending.

• LTSS programs providing care coordination showed reduced health care spending six months after starting these services.

The messages of these findings are stark and simple – the system must identify people at critical times when it can provide the right set of coordinated services to help individuals regain footing back in their homes and communities. Ultimately, health care resources can be used more efficiently to improve the care experience and reduce the total cost of care.

Targeted care coordination is the cornerstone to improving care while lowering costs.  In targeting services, individuals need to be re-evaluated from time to time, as not all services need to be continued at the same level in perpetuity. This is a critical process to intervene in ways that improve quality of life and health, use health care resources more efficiently, and forestall nursing home admissions unless absolutely necessary.

Older adults and their families must be placed at the forefront when creating systems of care. The default in the health care system must be resest to return people to their homes with appropriate supports and not simply discharge them to the next lower level of care.



Gretchen Alkema

www.TheSCANFoundation.org

5/6/2015 3:26:58 PM

Re: Effective LTSS programs and policies

Using Risk Assessments to Target Care Coordination

In today’s rapidly-evolving LTSS service delivery system, care coordination has emerged as the cornerstone of effective service delivery in an integrated system of care. For most vulnerable older adults, their first interaction with LTSS often begins with a trip to the hospital.  Health systems have an opportunity to change the trajectory of care for those at risk for hospitalizations by identifying these individuals with LTSS needs in a timely manner. Targeted care coordination is the cornerstone to improving care for people while lowering delivery system costs. This means having the staff and operational models to properly screen for potential high-health care use, and identify those who have a need for further evaluation in real time.

A report from Avalere Health (http://bit.ly/1Kiw7Al) commissioned by The SCAN Foundation explores how gathering and using non-medical data to better coordinate care for high risk Medicare beneficiaries can improve person-centered care and be financially sustainable for health plans. The report confirms the long-held notion that when older Medicare beneficiaries have non-medical characteristics such as functional limitations, or self-reported fair or poor health, their risk for health care utilization increases dramatically, leading to higher costs for health plans. Avalere looked closely at how health risk assessments can provide a broader picture of the person receiving care that includes LTSS needs, and in turn, allowing health plans to best target care coordination and transitions programs.

Avalere’s analysis shows that when effective care coordination models are employed to address the medical and non-medical needs of targeted Medicare beneficiaries, their quality of care and daily living improves, leading to decreased use of high-cost medical services.

Lynne Person

DC Long-Term Care Ombudsman Program

5/8/2015 4:55:17 PM

The Long-Term Care Ombudsman Program advocacy efforts directly impact and are critical to the quality of care and quality of service delivery for residents receiving long-term services and supports.  Ombudsmen routinely monitor facilities to ensure compliance and ensure protection of residents’ rights.  A major function of an ombudsman is to investigate complaints by or on behalf of the resident – to the satisfaction of the resident.  Ombudsmen empower residents and family members through education, training, and participation in care plan and discharge planning meetings as well as family and resident council meetings.  The focus of our advocacy is the resident.  Ombudsman advocacy efforts positively influence legislation and policy change for LTSS beneficiaries. A person-centered approach to advocacy empowers and affords residents opportunities to make choices and decisions about their lives.  The importance of person-centered LTSS is that it puts the residents in the driver’s seat, where they belong. Ombudsman advocate for what the resident wants…

Anita Yuskauskas

5/10/2015 8:27:51 PM

•  What supports will help caregivers continue to provide care while maintaining their own health and well-being?
Long term care insurance that is widely available and financially accessible to everyone is needed to offset the support provided by family and friends. Long term care insurance has provided the additional assistance necessary for my family to support my mother to live at home. It would not have been possible if she didn’t have long term care insurance. My family and I just would not have been able to pick up the entire load. As it is, we are able to manage our "sandwiched" lives, and she is able to have her own life in her community surrounded by friends.
•  What assistance do older adults and families need when making decisions about long-term service and supports?
First and foremost, someone who can go over in detail the benefits of every form of long term care, the entire continuum. The majority of professionals in the system simply default to institutional care (still!!), or some other kind of a facility based service without even knowing about other options. I am fortunate to know the long term care system, and am able to educate my family about options, including ones that are not facility based.
After all these years I am surprised about the general lack of knowledge about community based options. I believe a medical home or something similar is needed with educated care coordinators who can assist the family to understand the full spectrum of long term care options and also help with financial planning.  In addition, a truly coordinated, person centered system of care is needed where those advisors or care coordinators understand the scope of medical, behavioral, and long term care needs the person has. States and managed care organizations are just now entering this integrated approach. This level of integrated and coordinated care is needed to support families to take care of their relative at home. The present system simply is not there yet.
•  What could be done to ensure sufficient numbers of highly qualified direct care workers for now and the future?
It would help to have more emphasis on technology so families could better support their relative who needs long term care. For example, computers with personal health records that include doctor records, staffing schedules and individual budgets would enable family members to stay on top of services and supports from a distance; telemedicine in long term care would translate as techno-support; using computers to monitor some of a person’s activities or provide emergency response;  or robotics for medication administration. All of these things need to be refined so we can perhaps decrease or use of staffing support, or use staffing optimally for support and services. In addition, staff who provide services need to be educated based on the individual needs of the person. Some people may need staff for personal care or help with activities of daily living, while others might need staff for socialization and linkage with the community, or transportation. Some of these services require professional training, while others do not. Finally, people helping people is a concept that aging baby boomers will need to practice. As people live longer and staffing becomes more limited, people will need to find ways to help each other. And this does not need to be done in facility or congregate care settings, but it will require some type of formal facilitation.

•  Are there current long-term services and supports programs or policies you think are the most or least effective or potentially duplicative?
The federal PACE program should be expanded. More people need to know about this benefit. However, the existing federal model needs to be expanded to accommodate different geographical areas, and not be limited to a centralized facility, but focus on what works for different areas. For example, in a more rural area a mobile medical care service might be needed. And instead of a facility based adult day care center, perhaps a staff person is needed to help those with chronic or disabling conditions to socialize with others in their own homes. Also, having some kind of “taxi” service would be helpful so people can  visit with their friends. Public transportation is simply not available in a lot of areas.
•  How can we better address the costs and increasing need for long-term services and supports?
Subsidize long term care insurance so people are motivated to purchase it…now!  Increase the benefit to last longer than a few years, and link it with something like a PACE-like program (where Medicare and personal pay or Medicaid can be used together). Instead of people going into nursing homes and spending down their resources, why not spend those resources at home on a PACE-like program, paying the Medicaid portion, similar to what they now do in nursing homes.

•  How can we harness technology to assist individuals with their long-term service and support needs?
Personal health records that are expanded to include long term care records; robotics to handle some basic care skills; computers for monitoring a person when they are alone.

Joe Caldwell

National Council on Aging

5/12/2015 2:27:13 PM

On behalf of the National Council on Aging (NCOA), below are our thoughts and recommendations for outcomes of the 2015 White House Conference on Aging in the area of Long-Term Services and Supports:

Long-Term Services and Supports Financing
•  Support the establishment of a voluntary, national long-term care insurance program that: (1) is actuarially sound, (2) is largely self-funded, (3) increases affordable options for working Americans, (4) does not exclude purchasers based on pre-existing health conditions; (5) improves market opportunities for private insurance options; and (6) produces significant savings to Medicaid.
•  Support the establishment of on-line national and state-based exchanges to simplify the market and assist individuals and employers with purchasing qualified private and public long-term care insurance.
•  Support requiring mid-size and large employers to offer their employees qualified private and public long-term care insurance options that meet key standards.
•  Remove barriers for individuals to acquire and access personal assets to pay for long-term services and supports needs.

Rebalancing and Cost-Effectiveness
•  Support extending the Balancing Incentive Program (set to expire in September 2015) and extending and improving the Money Follows the Person Demonstration (set to expire in September 2016) in line with proposals in the President’s Budget.
•  Provide additional details and assistance to establish demonstration projects to promote rebalancing and streamlining of HCBS in line with the proposal in the President’s Budget and recommendations from the Federal Commission on Long-Term Care.      
•  Invest in development of outcome-oriented, person-centered HCBS quality measures for duals integration and Medicaid managed long-term services and supports programs.
•  Support making spousal impoverishment protections for Medicaid HCBS permanent.
•  Support the establishment of a maintenance allowance for individuals receiving Medicaid HCBS, allowing individuals to retain assets for expenses associated with housing, food, clothing, utilities, transportation and medicines.
•  Support requiring states to provide all individuals receiving Medicaid HCBS opportunities to self-direct their services and supports.

Family Caregiving and Workforce
•  Issue an executive order forming a task force to enhance access to evidence-based healthy aging and family caregiver support programs for federal employees.
•  Enhance access to online evidence-based family caregiver support programs for caregivers of aging veterans.
•  Support increased funding for family support programs, including the National Family Caregiver Support Program and Lifespan Respite Care Program.
•  Issue CMS guidance on the requirement of a caregiver assessment in the final 1915(i) HCBS State Plan Option and extend the requirement across all HCBS authorities.
•  Provide financial incentives to states to establish matching services registries to assist individuals with finding and hiring qualified direct care workers.
•  Improve data collection on Medicaid HCBS, including data on the direct care workforce, self-direction, waiting lists/unmet needs for services, and additional data elements for Form 372 1915c waivers, MMIS Form 2082, and 1915b and 1115 waivers.  
•  Establish a national plan to support family caregivers as recommended by the Federal Commission on Long-Term Care.
•  Support the establishment of a refundable caregiver tax credit to assist informal caregivers and maximize their efforts to support their loved ones at home.

Brian Vestergaard

LifeSecure Insurance Company

5/13/2015 1:28:40 PM

LifeSecure Insurance applauds the goal of the WHCOA and welcomes the opportunity to join others in providing comments and participating in this important conversation. As shown in the policy briefing, we know that state and federal Medicaid budgets – and the budgets of family caregivers – are being stretched as far as they can go to provide long term care services and support (LTSS). Meanwhile long-term care insurance (LTCI) accounts for just 3.3% of annual LTC spending.

This is a gap that private solutions like LTCI can bridge. If one in four working age adults were to purchase and maintain a policy throughout their senior years, then by 2050 the savings in Medicaid nursing home expenses would total $48 billion annually, and the savings in annual out-of-pocket expenses would total $69 billion, according to a recent American Council of Life Insurers study.

We believe that through public and private collaboration we can improve the quality and affordability of LTSS. It must start with a collaborative push to educate Americans on the importance of planning ahead. LTC planning and solutions like LTCI are a vital piece of the retirement puzzle, yet that fact is often lost on families, whether it’s due to a denial of need; misconceptions about  Medicare/Medicaid in LTC financing and who pays for care; or simply waiting too long to plan.

Establishing a comprehensive public-private LTC financing program is an opportunity for more hard-working American families to access the affordable, quality LTSS they deserve, while also avoiding the potentially disastrous impact the increasing demand for LTSS will have  on federal, state and family budgets.

Fay Gordon on behalf of Justice in Aging

Justice in Aging (formerly National Senior Citizens Law Center)

5/12/2015 7:10:43 PM

Question 6: How Can We Better Address the Costs and Increasing Need for Long-Term Services and Supports?

Justice in Aging (formerly the National Senior Citizens Law Center) believes the foundation of our LTSS system should be a high quality, accessible network of services that support individuals to live with dignity and independence at home and in the community.  Home and Community Based Services (HCBS) are both the preference of individuals who require LTSS and the most cost-effective way to deliver LTSS.

Unfortunately, Medicaid, the nation’s largest payer of LTSS, continues to give preference to the provision of LTSS in institutional settings instead of at home and in the community.  We can better address the cost and increasing need for LTSS by shifting the delivery of Medicaid-funded long-term services and supports away from institutions and into the community.  We recommend the following:

1)  Provide HCBS to Every Medicaid Beneficiary Who Needs Services
2)  Harmonize Eligibility Standards for Coverage of Nursing Home Care and HCBS
3)  Mandate and Make Permanent Medicaid Spousal Impoverishment Protections for Spouses of HCBS Enrollees
4)  Establish Income Allocations Sufficient to Allow Medicaid Enrollees to Afford Room and Board Expenses
5)  Fund and Require CMS to Develop and Enforce Quality Standards for Medicaid-Funded HCBS
6)  Emphasize HCBS in the Reauthorization of the Older Americans Act
7)  Develop Consistent Funding Sources for Aging and Disability Resource Centers

More information on this recommendations is available in our brief: The HCBS Opportunity: Recommendations for the Commission on Long-Term Care: justiceinaging.org/.../...mmissionBrief-031913.pdf.

Fay Gordon on behalf of Justice in Aging

Justice In Aging (formerly National Senior Citizens Law Center)

5/13/2015 2:41:03 PM

Question 6: How Can We Better Address the Costs and Increasing Need for Long-Term Services and Supports?

Justice in Aging (formerly the National Senior Citizens Law Center) believes the foundation of our LTSS system should be a high quality, accessible network of services that support individuals to live with dignity and independence at home and in the community.  Home and Community Based Services (HCBS) are both the preference of individuals who require LTSS and the most cost-effective way to deliver LTSS.

Unfortunately, Medicaid, the nation’s largest payer of LTSS, continues to give preference to the provision of LTSS in institutional settings instead of at home and in the community.  We can better address the cost and increasing need for LTSS by shifting the delivery of Medicaid-funded long-term services and supports away from institutions and into the community.  We recommend the following:

1)  Provide HCBS to Every Medicaid Beneficiary Who Needs Services
2)  Harmonize Eligibility Standards for Coverage of Nursing Home Care and HCBS
3)  Mandate and Make Permanent Medicaid Spousal Impoverishment Protections for Spouses of HCBS Enrollees
4)  Establish Income Allocations Sufficient to Allow Medicaid Enrollees to Afford Room and Board Expenses
5)  Fund and Require CMS to Develop and Enforce Quality Standards for Medicaid-Funded HCBS
6)  Emphasize HCBS in the Reauthorization of the Older Americans Act
7)  Develop Consistent Funding Sources for Aging and Disability Resource Centers

More information on this recommendations is available in our brief: The HCBS Opportunity: Recommendations for the Commission on Long-Term Care: justiceinaging.org/.../...mmissionBrief-031913.pdf.

Gretchen Alkema

www.TheSCANFoundation.org

5/13/2015 3:03:46 PM

Re: Assistance in making decisions about LTSS

Establish Care Coordination Standards for Integrated Systems of Care

Several states are now implementing programs that integrate health care and long-term services and supports (LTSS) for older adults.  Care coordination is a critical component of an integrated service delivery system, providing older adults and families with information about health and LTSS delivery options and assistance to avoid unnecessary institutionalization. The challenge in providing these services stems from multiple definitions and standards for how to deliver care coordination. As a result, what care coordination means in one health system may be entirely different in another similar health system. This confusion is due in part to the lack of specified standards and guidelines for care coordination in an integrated system of health care and long-term services and supports (LTSS).

We recommend the establishment of care coordination guidelines and strong accountability standards for health plans serving individuals in an integrated system of care.  This helps older adults and their families know what to expect from a health plan or system that offers “care coordination.”  Specifically, care coordination should be a required service authorized as part of any integrated service delivery system, along with the other required health and LTSS services.  Further, the standards should specify an individual’s rights to access care coordination, identify which entity(s) is/are responsible for ensuring this access, and establish an appeals process for recourse in the event care coordination service is not delivered. Such standards will go a long way to clarify the individual’s right to this essential service and ensure access to the necessary services and supports in the community.

Jennifer Dexter

Easter Seals

5/14/2015 9:23:43 AM

On behalf of Easter Seals, I thank you for the release of the policy brief on the important issue of access to long-term services and supports (LTSS).  

Easter Seals has a long and significant history as an advocate for older adults, people with disabilities and their caregivers.  Easter Seals has been an instrumental voice in advancing policy that supports the independence of older adults and people with disabilities through access to healthcare, transportation, job training employment, housing and assistive technology, caregiver supports and more.  Our comments in response to the White House Conference on Aging issue brief on LTSS are informed by this experience.

Caregiver Issues

The Easter Seals "Many Faces of Caregiving Study" uncovered several trends that have policy implications.  This study clearly reminds us that caregivers are a diverse group both in who they are and who they are caring for.  Caregivers come from a wide age range, are as likely to be male as female and have different types of relationships with the person they are caring for. Another finding is that the general public is not prepared to either be a caregiver or to need care.  There is clearly a need to increase efforts to help people understand and plan for caregiving and to support those who are caregivers.  In addition, those programs that do exist to help caregivers need to be responsive to a variety of relationships that caregivers have with the people they care for.  Right now there is not consistency among public programs about who qualifies as a caregiver and definitions vary in their inclusiveness of different kinds of family and other relationships

Access and Financing Concerns

Easter Seals knows that educating the public about care needs and planning will not be effective if there is not a system of supports available when people need them.  Financing and availability of LTSS such as in-home care, respite, adult day services, personal attendants, assistive technology and more remains a barrier for many people. In order to access these services, the only options right now are to impoverish yourself to qualify for Medicaid, purchase long-term care insurance that is often too expensive or difficult to qualify for or pay directly out-of-pocket which most people cannot sustain and may lead to enrollment in Medicaid once resources are depleted.  

Network Adequacy

Our country’s LTSS system is also not well coordinated or integrated with our acute care system.  Until very recently, there has not been an incentive to provide networks of LTSS providers to coordinate services.  For instance, someone discharged from the hospital who may need support during the day so their caregiver can continue to work does not always have one place to go to get information.  It may be difficult to find the options available in their home and community and learn how to coordinate the need for things like physical therapy and other medical care.  As our Medicaid and broader healthcare system are evolving, there is a need to support the development of comprehensive networks of LTSS service providers and to develop streamlined/defragmented solutions to integrating acute care with these networks to more effectively meet individual support and health care needs while at the same time containing costs to the system.

Policy Recommendations

Easter Seals calls on Congress and the administration to work with state and local government to achieve the following goals:

1) Help people finance long-term services and supports by:
     o  Strengthening Medicaid;
     o  Increasing access to private long-term care insurance, and;
     o  Creating new and innovative alternative financing options.
2) Increase the funding for and availability of federal supports for caregivers including, but not limited to, the following programs:
     o  Child Care Development Block Grant;
     o  Family support for people with developmental disabilities;
     o  National Family Caregiver Support Program;
     o  Lifespan Respite Program;
     o  Transportation solutions for people with disabilities and older adults, and;
     o  Veterans caregiver support programs.
3) Support caregivers through assuring that federal programs are well coordinated and are inclusive of all caregivers and types of families and relationships.  

Gretchen Alkema

www.TheSCANFoundation.org

5/14/2015 2:23:59 PM

Re: Assistance in making decisions about LTSS

Universal Assessment: The Cornerstone of Person-Centered Care

Traditionally, multiple medical and long-term services and supports (LTSS) providers assess individuals using different assessment tools, with information used for different purposes.  This serves only to create “assessment fatigue” for the individual needing care.  A well-coordinated system of care can exist if the entities that administer and oversee the system know the full scope of need and preferences for each individual, and organize services based on information gathered in a single assessment designed to meet all health and functional needs.

Ultimately, a uniform process with connected data elements (often referred to as “universal assessment”) can be used to evaluate an individual’s needs in a consistent manner and create a care plan tailored to that person’s strengths, needs, and service/support preferences in an equitable manner. This information can be utilized not only for service delivery purposes, but also to support quality measurement by gathering information that can be used to construct LTSS quality measures.  Further, universal assessment data can help program planners 1) understand the needs of their whole population, 2) support allocation at the person, program, and state levels in a standardized way, and 3) evaluate quality.

Policymakers at the federal and state levels should prioritize the establishment of universal assessment tools, guidelines and processes as the foundation to providing quality care that aligns with the individual’s stated goals, values, and preferences.

bob sinacore

5/18/2015 12:07:24 PM

I've just read 'Unaccountable', a book about how to improve the quality of hospitals by surveying hospital staff on how safe the services they're providing are. I strongly suggest we do the same thing in Nursing Homes. The basic question is would you place your loved one in the facility where you work. The book was written by Dr. Marty Makary of Johns Hopkins Hospital.

Jane Rohde

JSR Associates, Inc.

7/19/2015 6:02:33 PM

In addressing surveys and benchmarking outcomes, I recommend that CMS and the VA adopt/support the utilization of the Facility Guidelines Institute's Guidelines for Design and Construction of Residential Health, Care, and Support Facilities (www.fgiguidelines.org)  These Guidelines include a Resident Safety Risk Assessment and the promotion of continual improvement by benchmarking outcomes (surveys being one component for gathering data).  
There is also the Senior Living Sustainability Guide (www.withseniorsinmind.org) that focuses on the development of understanding resident desired outcomes, organizational mission and goals, operational process and procedures - that are subsequently supported by the physical environment within a social-cultural context.  The framework stresses the importance of a Continuous Quality Improvement (CQI) program that regularly evaluates the changes and satisfaction of residents, family, staff, and visitors that support person-centered care.  

Gretchen Alkema

www.TheSCANFoundation.org

5/19/2015 5:46:13 PM

Re: Assistance in making decisions about LTSS

Elevate Person-Centered Care

The SCAN Foundation believes that care coordination models that include person-centered care at the core increase an individual’s engagement in his/her care and create better health outcomes.  Person-centered care is an approach to health care and supportive services in which care is directed by the individual needing care and allows him or her to identify their goals, preferences, and desired outcomes in an effort to improve their overall quality of life. To fundamentally engage the American public in the future of the health care delivery system, we need to see value through the individual’s eyes as people endeavor to live their lives to the fullest, despite limitations. As government agencies and health care providers work to design and integrate person-centered care into long-term care planning, it is critical that there be a common understanding of person-centered care as well as how to develop and implement these concepts through the health care delivery system.

Gretchen Alkema

www.TheSCANFoundation.org

5/19/2015 5:48:17 PM

Re:  Addressing cost and increasing need for LTSS

Making Quality Measures Relevant to the Individual

Most quality measures identify outcomes from an acute care systems perspective, rather than measuring quality from the individual’s perspective.  For example, documenting hemoglobin A1C levels or body mass index scores may measure clinical quality, yet these markers reveal little about a person’s daily living needs and how care decisions are made.

Over the years, quality measurement has been limited to three distinct buckets:
• Is the environment where care is delivered safe and staffed appropriately?
• Are the technical aspects of care consistent with data driven guidelines?
• Are patients satisfied with the service they receive?

The problem with this approach is that the measures do not reflect the totality of the experience of the person receiving care. While these elements are important and necessary, they do not provide a complete look at quality, particularly for those who have serious chronic illness or functional limitations.

The challenge in front of us is to develop the next generation of quality measures that get at the heart of how people experience care delivery and what their values are in these interactions. New measures need to build upon and complement the important medically-oriented measures described above.

Current efforts are underway that seek to develop a next generation of quality measures that will:
• Define quality as improving the life of a person, not perceiving them strictly as a patient;
• Place functional outcomes, or how the person receiving care desires to live their everyday life, on par with clinical outcomes; and
• Create processes that track outcomes over time since functional needs and personal goals change.

Everybody wants quality care, and the system as a whole wins when it is done well. Care that is both technically correct and consistent with a person’s needs, values, and preferences can unlock the potential for making decisions based upon value to an individual’s life, payment that prioritizes performance, and to the often-cited yet rarely seen program that delivers better care at lower costs.

Jill Grundfest

5/21/2015 12:26:34 PM

I don't know if this goes here, but it seems better than other places--we need more public transportation in rural areas, like public buses.  There is no public transportation where I live, in a rural area of upstate New York.  I love my home and want to stay in it, but if I eventually can't drive, I'm doomed.

I hope the powers that be recognize that this is a need for eldercare, among other populations and purposes.

Gretchen Alkema

www.TheSCANFoundation.org

5/27/2015 12:34:31 PM

Re: Addressing LTSS cost/financing

Working Towards Politically-Balanced, Research-Driven LTC Financing Solutions
It is time to develop stable, affordable long-term care financing options that will ensure support for people who need it today and create  new tools for working families to plan and pay for care needs in the future.  The Commission on Long-Term Care, chaired by Bruce Chernof, President and CEO of The SCAN Foundation, submitted a report (www.ltccommission.org) to Congress that discussed various principles for long-term care (LTC) financing.  One of the reasons why the Commission did not develop specific policy recommendations that responded to these principles was due to the dearth of data describing the individual cost and economic impact of various long-term care financing options.  As a result, The SCAN Foundation is partnering with AARP and LeadingAge to support the Urban Institute and Milliman, Inc in developing an analytic framework for comparing major strategies for reforming LTC financing options.  Modeling results will be finalized and disseminated later this fall.  Additionally, the Bipartisan Policy Center kicked off its Long-Term Care Initiative in 2014 and will deliver specific policy recommendations toward the year’s end.  Stakeholders from all sectors should examine results from both of these efforts and continue advocating for state and federal policymakers to seek active solutions to financing future long-term services and support needs.

Gretchen Alkema

www.TheSCANFoundation.org

5/27/2015 12:36:16 PM

Re:  Addressing cost and increasing need for LTSS

Measuring Performance Influences LTSS System Transformation

Evaluating states’ performance in long-term services and supports (LTSS) provides insight into successes and challenges to improve the LTSS system.  The 2nd State Scorecard on Long-Term Services and Supports (Scorecard; http://www.longtermscorecard.org/), produced by the AARP Public Policy Institute with support from The SCAN Foundation and The Commonwealth Fund, yields the only comparative analysis of the LTSS system across all 50 states.  Using the most recent data available, the Scorecard ranks states on how well each delivers LTSS to older adults and people with disabilities.  The Scorecard provides a platform to engage in conversation about system performance, areas for opportunity, and the importance of continued system transformation.

LTSS should be affordable, high-quality, and well-coordinated in order to support older adults and people with disabilities in the setting of their choice. This 2014 Scorecard uses measures within five domains to evaluate LTSS system performance – 1) affordability and access, 2) choice of setting and provider, 3) quality of life and quality of care, 4) support for family caregivers, and 5) effective transitions.  The findings do not capture every aspect of system performance, as in many areas, characteristics cannot be measured due to lack of data and information. One way to gain a more robust understanding of the cost and need for LTSS is to develop standard quality measures for LTSS.

Ultimately, the system should focus on helping individuals return safely to their homes after a medical intervention with the right support, in order to avoid unnecessary institutionalization. States need to develop tools that accurately assess the range of people’s needs in an organized and uniform way to enable access to the right services at the right time in the right setting. Lastly, and perhaps most pressing –working families need tools in order to be able to plan and pay for future care needs.


Ellen Rabin

Meals On Wheels West

5/28/2015 6:33:44 PM

Hunger and food insecurity need to be in the discussion.  Just because Meals On Wheels programs exist in the communities does not mean that those who are hungry are receiving meals. There are waiting list in the communities that need the home delivered meals the most.

Low income, disabled seniors need to have proper meals each day.  Reductions in SNAP benefits are not helping the situation.

Food and nutrition programs need to be on in the conversation.  I have attended several conferences where food is not mentioned even once.

stella

Penterman Professional Care

5/31/2015 9:02:43 PM

this is true Hunger and food insecurity is the most important specially to those disabled seniors.

Robert Espinoza

PHI (Paraprofessional Healthcare Institute)

6/3/2015 9:57:10 AM

We applaud the inclusion of Long-Term Services and Supports (LTSS) as a core issue for the 2015 White House Conference on Aging (WHCOA). As the country’s premier expert on the direct-care workforce, PHI brings decades of experience in reshaping workforce policy and practice, particularly improving the quality of jobs held by the nation’s more than four million direct-care workers. Through a multi-faceted approach that combines training, research, and advocacy, we are strengthening low-income communities, building economic stability for individuals and families, and improving the care provided to low-income elders and people living with disabilities.

We strongly agree with the White House Conference on Aging that meeting the LTSS needs of older adults and people with disabilities represents one of the primary challenges for this generation. We must ensure that all individuals as they age can live in dignity and remain engaged in their communities. This issue also has fiscal importance: the cost of care for individuals with multiple chronic conditions who are also living with functional limitations is more than twice the cost of care for their peers without functional limitations.   On this point, PHI strongly supports—and expands upon through these comments—the brief’s acknowledgment that direct-care workers play a critical role in the delivery of high-quality, efficient LTSS to millions of older people and people with disabilities.

As noted by the AARP Public Policy Institute, the ratio of family caregivers to older adults, age 80 and older, will plummet from about 7:1 today to less than 4:1 in 2030. Unfortunately, these Americans will experience diminished care unless we innovate and better support the direct-care workforce. PHI’s research estimates that while the demand for home care workers will increase 50 percent by 2022, the primary labor pool from which direct-care workers are drawn—women, ages 25-54—will grow by less than one percent. And while family caregivers are essential to the provision of care in this country, many people lack traditional family supports or are increasingly strained to offer such care, especially in complex health scenarios. It’s in this context that PHI responds to key questions posed in the issue brief.

1) "What could be done to ensure sufficient numbers of highly qualified direct-care workers for now and the future?"

To ensure sufficient numbers of qualified direct-care workers, action must be taken on several fronts. The first area in critical need of attention is improving compensation for direct-care workers both in terms of wages and benefits. Median wages for personal care aides (the fastest-growing occupation in home care) has fallen below 133 percent of the federal poverty level (FPL) in 24 states and below 200 percent of FPL in every state. PHI recommends:

• Improving wages and overtime protections for direct-care workers, while properly financing the LTSS system and reimbursing LTSS providers for the actual cost of services.
• Working with state governments and agencies to incentivize Medicaid expansion to millions of low-income families under the Affordable Care Act.
• Assessing and expanding health coverage among direct-care workers, ensuring that they are in good health and can provide reliable care to older people and people with disabilities.

2) "What could be done to ensure an adequate workforce with the knowledge and skills needed to support an increasing population of older Americans with chronic conditions and/or functional limitations?"

To create the direct-care workforce we need, action must be taken to provide direct-care workers with opportunities for training that help workers develop and hone skills—both technical and relational—that are necessary to support older adults who need LTSS. PHI’s evaluation and experience show that improving training can also reduce rates of injury and reduce turnover, thus improving working conditions and quality of care while lessening expenditures for care. For example, in Michigan, one of the six states chosen to implement the Personal and Home Care Aide State Training (PHCAST) demonstration project, project evaluators found that training significantly improved worker job satisfaction and confidence, important factors for staying on the job.

Better training becomes paramount as the industry rapidly grows. Direct-care workers account for 30 percent of the health care workforce, far outnumbering other health care occupations such as physicians, nurses, therapists and medical assistants. Expected to add 1.6 million to its ranks over the next decade, the direct-care workforce will total nearly 5 million workers by 2020.  At 5 million, the direct-care workforce will become the nation’s largest occupational group, exceeding registered nurses (3.4 million).  PHI recommends:

• Drawing on findings from the Health Resources and Services Administration’s forthcoming report to Congress on outcomes from the PHCAST program to promulgate federal minimum training standards for personal care aides.
• Modifying current minimum federal training requirements for certified nursing assistants and home health aides to align with recommendations by the Institute of Medicine for a minimum of 120 hours of training prior to delivering services.
• Developing and disseminating CMS guidance for states on LTSS workforce pre-service and ongoing training, while making available federal match funds for training for home care workers equal to what’s offered for training in institutional settings.
• Incorporating direct-care worker quality measures into federally funded LTSS programs and demonstrations by drawing on related sources such as the recommendations in the August 2014 National Quality Forum health workforce report related to training and the development of core competencies in the care of older adults.
• Funding pilots and demonstration projects that train aides and family caregivers in better working together to enhance the quality of care for older people and people with disabilities, as well as funding additional training related to specific diseases and health conditions prevalent among older people.
• Requiring that grantees of the Center for Medicare and Medicaid Innovation design methods to identify, assess, and include family caregivers in care planning.

Basic training for direct-care workers is an essential step to building the workforce needed to support the growing population of older Americans with chronic conditions and/or functional limitations. In addition, we must create opportunities for career advancement for direct-care workers. PHI recommends:

• Funding pilot projects to develop career ladders for direct-care workers through vehicles such as the Center for Medicare and Medicaid Innovation, the apprenticeship program at the U.S. Department of Labor, and the President’s American Graduation Initiative aimed at supporting students enrolled in community colleges nationwide. Such pilots should be inclusive of new occupational titles and roles used in health reform efforts that seek to reduce unnecessary hospitalization and emergency room utilization.
• Disseminating the findings of the St. John’s Enhanced Home Care Pilot Program and other models that integrate the direct-care worker into the clinical care team in order to improve outcomes, as well as funding providers to duplicate ¬successful interventions. The aforementioned pilot produced marked decreases in hospital and emergency room utilization among participants.

3) "How can we harness technology to assist individuals with their long-term service and support needs?"

In partnership with our affiliates in New York, PHI is currently conducting the “Care Connection” project to create a “Senior Aide” role and use targeted telehealth interventions to maximize the value and impact of the interactions between home care workers and more than 1,100 Medicaid beneficiaries—improving the quality and efficiency of care. The project, by enhancing communication skills and information-sharing, is improving linkages among clinicians, care management staff, and home care workers in order to improve the health of Medicaid-eligible individuals. Aides are trained to report symptoms and changes in conditions in order to promote timely interventions and better health outcomes—potentially reducing avoidable hospital admissions and re-admissions, among other benefits. Care Connections successfully uses Practice Unite software that enables greater efficiency in reporting changes in conditions, while providing other supports to clients and family members such as scheduling transportation and making connections with physician offices. PHI recommends:

• Funding telehealth interventions and demonstration projects that support home care workers in the delivery of care to people receiving LTSS.

Beth Meyer-Arnold

Cygnet Innovations Group, LLC

6/5/2015 10:56:49 AM

Adult Day Services provides the most amazing benefit to consumers.  It provides the care and services that the participant needs, in a social setting, offering learning opportunities, physical fitness, health care management, dementia care and recreational programs.  It also provides respite for the caregivers, allowing families not only to stay together, but to thrive with the comfort that the person can stay in the home.  And it does this at a fraction of the cost!
We in America, must continue to build opportunities and services for older adults and their care partners. We  will not be a caring, just, passionate or thriving country, if we don't honor and care for our old and disabled. We must stop offering bingo games with stuffed animals as prizes, coloring books as "art class" and hours and hours of sitting in wheelchairs and recliners all day long waiting for the next meal.
Adult Day Centers are the answer!  These centers are vital, full of life, offering arts, learning, health and physical fitness for all generations, at the same time, supporting families to keep the person living in their community.

Dov Felder

First Healthcare Management Co.

6/5/2015 2:13:12 PM

Adult Day Care is a great option for the elderly in need of assistance. It provides all the same services as a nursing home at a fraction of the cost. Medication administration, therapy, social services, nursing services, meals, and transportation to and from home is generally included in the services provided. Additionally, the client/patient is living at home and better integrated into the community. It's time for Medicare to start covering this cost to provide better care of our elderly in need of long-term care and save our taxpayers significant money.

Kevin Mahoney

Boston College School of Social Work

6/7/2015 2:36:55 PM

For many, the option to self-direct by hiring the workers of their choice or managing their own budgets is critical.  Some are driven by the need for control, as so much of their life is not in their control; others want flexibility to tailor supports to their own lifestyle, while still others want better access to the community and the ability to repay, in some small way, families and friends who are providing so much support for free.  This desire to self-direct will increase with the aging of the baby-boomers and the growing diversity of our population.  Given the evidence-based research showing that the participant-directed option expands access, improves quality of care, is closely related to success in re-balancing systems and need not cost more, we at the National Resource Center for Participant-Directed Services urge that policymakers:
a) require that this option be offered;
b) develop quality indicators;
c) specify training requirements for care managers and support brokers;  and
d) urge the Center for Medicare and Medicaid Services and the Administration for Community Living to provide examples of promising approaches and practices.
The REAL LIVES BILL, recently signed into law in Massachusetts provides a good example.  The guidance called for in Section 2402a of the Affordable Care Act is a good beginning but much more needs to be done to empower consumers and their families.

Dr. Cheryl Townsend Winter

WA State Council on Aging

6/8/2015 12:16:50 PM


The Washington Association of Area Agencies on Aging (W4A) and the Washington State Council on Aging (WASCOA) have explored the issue of long-term services and supports for older Americans and identified the following priority recommendations:

•  INCREASE SUPPORT FOR CAREGIVERS by reauthorizing the Older Americans Act and increasing Title III-E funding for more Area Agency on Aging-coordinated resources for family caregivers and for Administration on Community Living-initiated and coordinated education and outreach to caregivers and medical professionals. Include a set of quality initiatives that strengthen and support unpaid caregivers to improve their commitments, capacity and competence aimed at strong quality and long term support.

•  IMPROVE TRANSPORTATION through specific regional interventions that are appropriate for local needs and regional planning that includes public participation from all demographics.

•  ADDRESS FINANCIAL CHALLENGES FOR THOSE WHO NEED LTSS SERVICES through more rational and fair cost-sharing for LTSS services (especially for middle class consumers), through public education on the importance of establishing mandatory retirement savings and LTSS insurance programs. Establish federal regulations and standards for LTSS insurers on definitions and limits to changing benefits.

ADDITIONAL COMMENT: Continue encouraging the coordination of health and social services through the Affordable Care Act.

Jaci Weber

Darrell E. Davis Adult Day Center

6/8/2015 1:18:52 PM

Adult Day Services are an alternative for caregivers for help with loved ones instead of placement in nursing homes.  So often the elderly are capable to remain in their own homes, with assistance, but are prematurely placed in a nursing home.  Adult Day Centers cost less also.  They are the choice to make to provide our elderly with the care they need while still allowing them the dignity they deserve.

Melanie McNeil

Georgia State Long-Term Caer Ombudsman

6/8/2015 4:17:53 PM

On behalf of the Systems Advocacy Committee of the National Association of State Ombudsman Programs, our responses to the discussion questions include:

Older adults and individuals with disabilities are part of our communities, whether they live in a single residence or in a facility setting; as individuals who care about this population, we must change our language to reflect that all of us are part of our communities.

Older adults, individuals with disabilities and their families need access to reliable data about all of the long-term services and supports available to them, in all of the possible settings and the actual cost of the services.  Continuing support of the Aging and Disability Resource Connection is critical to providing access to  unbiased information.  Improving the information available on Medicare.gov and other state and federal websites is also extremely important for individuals and families to assess the pros and cons of institutional settings.

Ensuring sufficient numbers of direct care workers who are knowledgeable and skilled requires raising awareness of the direct care career option among students from an early age.  Some strategies to make the career more appealing include: improving wages, utilizing technology to ease the workload, developing a career ladder,  promoting consistent assignment so that workers know their care recipients and each party develops more satisfaction with the experience.

Consumer direction is an important and effective policy that should be continued and promoted.

Long-Term Care Insurance products must be made more affordable and provide more coverage.  More and more individuals will be turning to Medicaid for long-term care financing because long-term care insurance is either not affordable or not available because the individual has conditions that exclude him or her from coverage.

Public policy and funding must be more available to innovators who are developing technologies to make us all smarter, more efficient and better connected.  Communication technology, for example,  is an inexpensive way to help older adults and individuals with disabilities stay connected to the larger community improving quality of life;  combat the loneliness and isolation that makes them vulnerable to abuse, neglect and exploitation; and assist with connection to long-term services and supports providers as well as other health care providers to improve overall health, thereby reducing health care costs.


Louise Blackburn

Adult Day Health Care of San Simeon by the Sound Center for Nursing and Rehabilitation

6/10/2015 8:32:27 AM

Adult Day Health Services are a valuable resource for seniors who are aging in place. It is a means to Case Management; Nursing Management as well as socialization among many other benefits. It is much less expensive than placement in a Nursing Home and helps maintain the physical and emotional well being of our Seniors and also their caregivers. Consumer Directed Personal Assistance Program is excellent for many families. But a very serious problem for many people in our rural east end of Long Island is a lack of ANY available care in the home. There are not sufficient numbers of home health aides nor care agencies.  (Many aides have to take a train from Queens or Brooklyn and be picked up by families to care for the seniors). This should be translated to more care approved by Managed Long Term Care in to the Adult Day Services. These seniors and their caregivers are at great risk for injury and illness because they have insufficient care at home.  There should be an increase in program hours approved by the states in order to help keep people out of Nursing homes.  If these at Risk seniors are unsafe it increases hospitalizations thereby increasing Medicare costs and long term care costs. Preventative care and maintaining wellness are the driving force behind Adult Day Health services in order to keep people in the community as long as possible. MLTCs should be encouraged to increase the hours of care in an ADHC when services lack at home.  

Marcus Harazin

Albany Chapter New York StateWide Senior Action Council

6/11/2015 1:12:03 PM

Long Term Care Services and supports continue to be funded and managed federally through a fragmented approach where form chases funding.  Consumers are often forced to turn to the Medicaid program to access services because that is where the money is.   Payers work to find reimbursement from the highest payer rather than focusing on the needs of the consumer.

LTCSS should be funded by a social trust fund structure through Medicare so that costs will be spread equitably and the programs Medicare and Medicaid can become integrated.  States should be directed to use a portion of fines levied on Nursing Homes or Home Care Agencies to expand the Long Term Care Ombudsman program.

The Older Americans Act provides  communities with a framework to plan and coordinate long term care services and this role should be strengthened during the reauthorization process.

State and federal policy makers have been rushing to contract out the rate setting, bill paying, and implementation responsibilities for LTSS to Managed Care companies.  There is no evidence that running Medicare and Medicaid through Managed Care companies will save consumers money or provide better care.  This is changing the locus of accountability from a community agency to a corporate structure. Each managed care company has extensive duplicative administrative expenses including a CEO, a CFO, a CIO, a marketing department, and a fraud department---none of these expenses are on direct health care.   Public funding for health care should be spent on health care services not on extensive administrative costs and profit.

The federal government must provide consumers with protections and checks and balances to assure that they have access to information about their long term care services and have due process to complain about the amounts, quality or cost of their care in their communities.  In addition, the federal government should set safe staffing ratios for institutional  settings and a mandatory quality standard.

Dr. C. V.

Cleveland Clinic

6/11/2015 3:52:37 PM

It is in the best interest of both the caregiver and the elderly person they care for that the PCA, caregiver, be educated and certified in eldercare.  The PCA should pay for their own education and credentials, not the state.  This improves the quality of care for the elder, the quality of life for the caregiver, reduced inadvertent elder abuse, hospital re-admissions, stress on all parties involved, improved healthcare team communication, employee turnover in agencies, and more.

Hank Annoni

The Afflerbachgroup.com

6/11/2015 5:09:14 PM

What a wonderful opportunity the White House Conference on Aging is bringing to senior care.
It presents a discussion on bringing 20th century long term care into the 21st century.  The antiquated thinking of nursing home" first" for Medicaid recipients or for that matter Medicare recipients cannot continue...it simply doesn't add up financially.  The need to support the rebalancing of our health care costs to emphasize Home and Community Based Services and Adult Day Services is long overdue.   Congressional leaders are now beginning to  recognize the need to find reasonable alternatives to institutionalized nursing home care.  The Grassley/Cardin SB 704 looks toward modernizing access for seniors to Adult Day Services.   Adult Day Services can provide long term care in a community setting, what seniors desire, and at a lower cost. Being able to be a part of the discussion of Long Term Care is a plus for our senior population as it begins to grow and demand more services.

Cathy Kontorchik

Home Nursing Agency Adult Day Center

6/12/2015 9:52:38 AM

I feel that the Adult Day program is such a beneficial service.  I have witnessed many family members who are at their wits end trying to juggle working full time, caring for their own families and also caring for their elderly loved ones.  With the help of our Adult Day Program, these family members are much more relaxed and are able to keep their loved ones at home with them instead of having to place them in long term care.  Also, since I am a provider of the service, I have seen the benefit of attending the adult day program first hand.  Our members are able to maintain their independence, seem to stay healthier due to our exercise and nutrition programs and have a better quality of life when attending our center.  Please continue to be an advocate for this program as many of our elderly truly do benefit from it.

Emily Warner

Center to Advance Palliative Care

6/12/2015 10:08:49 AM

The Center to Advance Palliative Care (CAPC) appreciates this opportunity to share our thoughts on the key topic areas that will inform the agenda for the upcoming 2015 White House Conference on Aging. Palliative care is essential both as it regards healthy aging, and the critical infrastructure needed for long term services and supports.

Palliative care is a rapidly growing medical and team specialty aimed at improving quality of life for persons with serious illness, and their families. It is appropriate for all people suffering from serious illnesses or frailty, regardless of diagnosis or stage of disease. It can be provided in any setting, including hospitals, nursing homes and in the patient’s home. Palliative care has repeatedly been shown to both improve quality of care while reducing the costs that would have occurred from preventable emergency department visits and non-beneficial treatments. Palliative care also provides an additional layer of support for patients’ caregivers—individuals who themselves are often 65 and over—who are at risk for poor health outcomes, and has been shown to improve quality and experience of care for caregivers.

The recent Institute of Medicine report, Dying in America, identified the structural and financial isolation for long-term services and supports from the health services sector as a serious barrier to providing high quality care for aging patients and their families. The report went on to identify palliative care as the single best opportunity to bridge this gap. The siloed nature of these sectors limits the opportunity for service integration and prevents smooth transitions across settings, but community-based palliative care can bridge this gap by assessing the patients and families and matching them to the services that best meet their needs. Absent the additional support connecting people with necessary and appropriate community-based services, patients often struggle to live independently and are subsequently moved to more restrictive and expensive healthcare settings than they would otherwise need. This has been the status quo in healthcare for the aging populations for many decades, and has recently come to the attention to the general public.

In 2014, Nina Bernstein’s article in the New York Times, “Fighting to Honor a Father’s Last Wish: To Die at Home” detailed the difficulty of trying to receive care in a system that cannot serve patients with need for both medical and social supports. The piece received over 1,000 comments from readers expressing anger and frustration. The article covered the story of Joseph Andrey, a man who spent the final years of his life being shuttled to and from several different hospitals and nursing homes when he desperately wanted to remain at home. His wishes were crystal clear in this regard, but the health system could not give effect to these wishes because of poorly aligned incentives and flawed policies that prevented quality palliative care in the home. The unwanted and non-beneficial services Mr. Andrey received caused him needless pain and suffering, while his caretaker daughter suffered emotional trauma and extreme stress. Meanwhile, the “care” he received in his final year of life cost Medicare and Medicaid over one million dollars. This situation could have been avoided with the availability of a few additional palliative care services and a team that could skillfully manage Mr. Andrey’s care.

It is clear that the White House has a firm grasp on the need for long term services and supports and the dramatic impact they have on maintaining and/or improving the quality of life for adults 65 and older – particularly those with functional limitations. As the White House takes steps to improve the availability and coordination of supports in the community, palliative care will be an essential strategy to help match patients and families to these services, ensuring that they have access to the right care at the right time. This will help reduce the number of unnecessary ED visits and hospitalizations, maximizing quality of life and improving the value of the care provided.

CAPC strongly urges the WHCOA staff to include palliative care in the conversations on long-term services and supports as it leads up to the 2015 Conference. CAPC would be happy to provide additional information on palliative care and how it improves the quality of life for patients with serious illness. We would also welcome the opportunity to discuss several policy levers we have identified that could improve access to palliative care, and how these are relevant to the larger discussion on long-term services and supports.

Julie Smerkar, LPN

VNA Extended Care Services, INC.

6/12/2015 10:57:03 AM

I cannot say enough about Adult Day services!  The benefits to consumers and their caregivers is phenomenal!!  We have had caregivers say things like "My business has improved so much since I don't have to worry about him", and "if it wasn't for the center Mom would have been in a nursing home years ago!".  It has been said that the average adult daycare stay is 6 months...we have clients who have been here for 10 years because they are physically active,  socially and mentally active and have a purpose!  We keep them healthy and help them be more independent which help them live longer and better yet STAY IN THEIR OWN HOMES!!  It would be a Godsend if Adult Day Services would be covered through Medicare.  It is certainly the most cost effective service, but the bottom line is there are still people who cannot afford it!  It's time we Give back" to our elders!

Judi Ahram

ElderWatch Plus Adult Day Services

6/12/2015 11:03:29 AM

The White House Conference on Aging offers all stakeholders who care for and about Older Adults an excellent opportunity to input and learn.  Thank you.
Adult Day Services provides a comprehensive and cost effective mechanism to enable Older Adults with functional impairment the ability to remain in their home and communities, as they and most Caretakers, wish.  
Adult Day Services can additionally offer extensive health monitoring and treatment, to persons recently discharged from Hospital and Sub Acute Rehab.  The cost effective and comprehensive value of Adult Day Services, should not be overlooked when determining the continuum of care to decrease Hospital readmissions.

Alyson Johnson-Sawyer

CarePartners Adult Day Services

6/12/2015 12:59:55 PM

Having worked in the Adult Day Services industry for the past 25 years I have witnessed hundreds of both caregiver's and participant's quality of life improved greatly by attendance in the Adult Day Services center.  I have heard hundreds of caregivers express the fact that they COULD NOT have been a successful caregiver without the assistance of the Adult Day Center.  

Watching participants regain a sense of purpose, establish friendships again after being isolated, and watching them blossom in a place that they can be themselves no matter what impairment they may have are all the reasons that have kept me passionate about providing this service to everyone interested.

Richard Gelula

National Consumer Voice for Quality Long-Term Care

6/12/2015 3:09:35 PM

With growing numbers of aging persons and frail elders depending on long-term services and supports, National Consumer Voice for Quality Long-Term Care (www.theconsumervoice.org) makes the following five recommendations to complement the important statement on this critical topic for the 2015 White House Conference on Aging:

1. Person-Centered Care.  It is not now and will not be sufficient to define care by its provision, but the meaning of care must be defined by a culture and commitment that puts the person receiving the care at the center of the services. This was the great promise of the Nursing Home Reform Act when it was signed into law in 1987 and should apply to all care recipients regardless of setting. The principle of person-centeredness must be owned by the public nationwide, by states, communities, institutions, healthcare professions, payers and providers. Without establishing person-centeredness in long-term care, our nation fails its aging population, particularly all those who are or will depend on others for their care and for their quality of life. Person-centeredness becomes a critical policy and program issue as services are contracted to companies that make decisions about the type and location of services that will be paid to providers on behalf of dependent persons. Person-centeredness also becomes critical as more long-term care consumers suffer from complex diseases including dementia that are challenging to caregivers.

2. Quality of Care.  Care must also be defined by quality standards. Conditions in over a third of America’s nursing homes that are rated on Nursing Home Compare as 1 or 2 star are intolerably poor and according to a recent report by the Department of Health and Human Services Office of Inspector General are dangerous as well, causing adverse events including injuries due to substandard treatment. Despite these ongoing critical care problems, nursing home enforcement actions are declining in number, and enforcement in cases of nursing home non-compliance with federal regulations - including poor care, abuse and neglect - continues to be used ineffectively, with remedies imposed not matching the severity of care problems and the full range of remedies available. In order to ensure quality care, we must fully enforce the nation’s laws and regulations governing nursing homes. In addition, poor care conditions are not limited to nursing homes but are prevalent across long-term care, including assisted living programs and facilities as well as care provided in the home; the regulation and oversight of these settings must be strengthened as well to protect consumers and enhance their quality of life and quality of care.  Lastly, we believe that the continued reduction of the use of physical and chemical restraints among long-term care consumers, as well as the protection of consumers’ constitutional rights through the elimination of forced arbitration clauses in long-term care contracts and any other measures that make it more difficult for consumers to seek legal remedies, is critical for the improvement of quality of life and quality of care in all long-term care settings.

3. Long-Term Care & Direct Care Workforce.  Another critical component of quality long-term care is having sufficient nursing staff, having direct care workers adequately trained to address the complex health and behavioral conditions they will face, having staff compensated with a living wage and reasonable health and time-off benefits so they can remain on the job, and having staff supported in their work by administrators and supervisors who ensure that the direct care workers can focus on quality outcomes for residents and consumers. Specifically, Consumer Voice calls for 4.1 hours of direct nursing care per resident each day in nursing homes, a direct service registered nurse on duty in nursing homes around the clock and not just a single eight hour shift as current federal law requires, and use of objective payroll data to confirm actual staffing levels in nursing homes.

4. Assisted Living.  These burgeoning services are designed to fill a vital need for people who may have only modest medical requirements but who require assistance with activities of daily living and around the clock supervision or care. Yet the reality is that without standards defining these facilities and the services they offer, there is great potential for misunderstanding and conflict about service expectations and the services actually made available. Many residents unknowingly sign contracts that limit the services they receive.  Promises of pleasant and good care often do not occur. Staffing may be inconsistent or just not available. Food can be of poor quality. Medical needs may not be met, a particular problem as care needs increase over time.  Overall, state regulations need to be strengthened and federal oversight needs to be established to protect residents. When residents run out of funds to pay for these services or when the facilities are no longer appropriate for their needs, there must be provisions in law addressing how they will be cared for and not just released to the streets. Finally, contract provisions also need to protect people as consumers; there needs to be full disclosure of what the prospective resident is getting into – and contracts need to be written in plain language.

5. Long-Term Care Ombudsman Program. Access to an independent advocate is critical to truly achieving the promise of quality and person-centered care for residents of nursing homes, assisted living, board and care, and similar long-term care facilities. Long-Term Care Ombudsmen resolve complaints raised by or on behalf of individual residents, empower residents to advocate for themselves, and address issues systemically to improve care and conditions for all residents. Appropriations to adequately fund the Long-Term Care Ombudsman Program are necessary to ensure that all residents have access to an ombudsman. Expansion of the program beyond nursing homes to board and care and assisted living occurred without additional resources.  Long-Term Care Ombudsmen help assure that the residents’ voice is heard, not only at individual facilities, but also in policy debates at the state and national levels.  A growing number of states have expanded the long-term care ombudsman program to also advocate for consumers receiving care and services in community based settings. Considering that many of these consumers have needs similar to those of residents living in long-term care facilities, it is reasonable to promote their access to an independent advocate as well. Any future expansion, however, must include adequate resources to support additional capacity and achieve program effectiveness.

Lex Frieden

National Advisory Board on Improving Health Care Services for Seniors and People with Disabilities

6/12/2015 3:46:53 PM

The NAB appreciates the WHCOA’s focus on LTSS and the critical role of informal and formal caregiving to support older Americans to remain independent in their homes and communities. The promise of comprehensive access to LTSS as we age, live with a disability or develop a disability has not been fully realized. The reality is that most of us will eventually develop or already have a disability. It is a complex conversation that is not easy to have, but one that must be engaged and addressed. We commend the WHCOA for assuring its inclusion within the conference agenda.

We value the WHCOA’s commitment to engage a national dialogue on these important issues and appreciate the opportunity to contribute our perspective on the following questions:

•  What supports will help caregivers continue to provide care while maintaining their own health and well-being?
We agree with the LTSS policy brief’s concern for the sustainability of the caregiver—a challenge spanning the personal questions of individual caregiver health, wellness and support, to broader questions of the capacity of the home care workforce and infrastructure to meet a growing demand for self-directed LTSS. Many older Americans rely on family and friends to provide needed personal assistance and supports. In 2006, the economic value of unpaid family caregiving was estimated at $350 billion annually (Kassner et al., AARP, “A balancing act: State long-term care reform,” July 2008). Families are very important supports for many older adults, which makes the potential for worker burnout and isolation of increasingly important concern. The NAB believes supports are needed to maintain the health and improve the quality of life for family caregivers. As an extension of this goal, we believe workplace policies need to recognize and accommodate employees who are family caregivers. With regard to models of comprehensive care coordination that address the needs of older adults, we also encourage the meaningful inclusion of family caregivers in such models. Underlying each of these opportunities, however, is a necessary and important conversation on capacity building—from the standpoint of both informal caregivers and formal services and supports.

At the choice of the individual, family caregivers may be appropriate as paid assistants. Public policy must be responsive to this important reality, whether through the expansion of existing options or the emergence of new initiatives. One option is Cash and Counseling (sometimes called Self-Direction). The Self-Direction initiative creates individual budgets whereby individuals have the ability to purchase and manage personal assistance and other LTSS. Self-direction encompasses the principles of self-determination by empowering people to hire and pay friends or family members as caregivers, further enhancing choice about the types of services the person receives and from whom. The NAB strongly recommends the expansion of this important, but often underutilized, initiative for supporting older Americans and their caregivers to maintain health and well-being.

•  What assistance do older adults and families need when making decisions about long-term services and supports?
Older adults should make their own life decisions, including decisions about LTSS, with the assurance of informed, individualized choice and the support of their families, as desired and appropriate to them. This focus on informed choice is at the center of person-centered planning processes and, now, a requirement under Medicaid LTSS. Broadly speaking, person-centered principles are relevant to all older adults and their families when making decisions about LTSS.

To assure informed choice, the NAB and others within the aging community recommend older adults and their families should be informed on the principles of self-advocacy, self-determination and person-centered processes. This is important because the person-centered planning process, as well as the resultant service plan, can be effective only when older adults for whom the services, supports and plan are intended are fully engaged in the process, have the information to make the choices about services and providers, and are comfortable self-advocating in terms of their needs, preferences and proposed solutions. For similar reasons, we recommend also that older adults receive meaningful, complete, easily understood and relevant (to the needs and preferences of the individual and their family) information about available services, supports and providers, as well as the consequences of those choices. To support informed choice, Navigators or others engaged in assisting older adults and families should receive training on the principles of self-determination, person-centered planning, home and community-based settings, requirements under the January 2014 Home and Community Based Services (HCBS) regulation, as well as the full array of choices available.

•  What could be done to ensure an adequate workforce with the knowledge and skills needed to support an increasing population of older Americans with chronic conditions and/or functional limitations?
As espoused through our Six Principles, the NAB is committed to the Independent Living (IL) Movement and the critical importance of expanding self-direction. A highly qualified, knowledgeable and skilled home care workforce is essential to protecting and expanding options for older adults to live and receive necessary services and supports in the community as they age. With the growth and reach of Centers for Independent Living (CILs), the Area Agencies on Aging (AAAs), and other community-based service organizations, the NAB believes these local organizations have the capacity and know-how to support the design, development and delivery of home-care worker training currently and the ability and desire to expand  their capabilities.

The size of the home care workforce – at approximately 5 million – soon will exceed that of the nation’s current largest occupation, registered nurses (3.4 million), in 2020 (Luz and Hanson, Home Health Care Management and Practice, May 2015). There is significant economic and human reason to invest in local home care workforce training and development initiatives. Such training programs developed in partnership with CILs, AAAs and other local community-based service organizations could be delivered through area community colleges, tech schools, and High School magnet programs specializing in health professions. In addition, translating these training materials to the virtual classroom can ensure the availability of cost-effective training programs. The NAB also recommends other mechanisms for ensuring the affordability of such trainings, including through training program stipends, paid practicums, and work credits for students employed part time in this field while in school. Tax credits or other benefits, including repayment of student loans and costs associated with training, may serve both as potential incentives and affordability assurances.

In addition to these training recommendations, the NAB encourages workforce investment in the form of national recruitment and placement programs, whether a job corps for personal attendants or the improved use of, and role for, internet job boards and Social Media. National immigration policy, too, may offer an important recruitment forum for formal, paid supports. To promote informal and peer supports in the community, new local initiatives may incentivize retirees to support their peers needing services and supports to remain independent. Innovative reward programs similarly could incentivize neighbor-to-neighbor volunteer caregiving. Lastly, and as we explore further below, the NAB supports the investment in new technologies, including robotics, for use as techno-assistants and overall to reduce the need for human assistance.

•  Are there current long-term services and supports programs or policies you think are the most or least effective or potentially duplicative?
As part of their independent health care reform, many states are employing approaches to achieve more balanced LTSS systems for older adults and people with disabilities. These states use pooled financing or coordinated funding as a financing mechanism to consolidate Medicare and Medicaid funding. The coordination of multiple funding sources promotes greater freedom and flexibility for state administration to: integrate acute and long-term services; promote choice for older adults to access services and supports they need to remain at home or live in the community; decrease or eliminate service fragmentation (and associated costs); achieve greater cost effectiveness by increasing use of HCBS; and, decreasing use of nursing facility services (Hendrickson, Global budgeting: Promoting flexible funding to support long-term care choices, 2004). In states in which these programs exist, many Medicaid/Medicare dually qualifying individuals are able to obtain the LTSS they need to live independently where they choose.

Despite the popularity of these types of integrated programs that promote personal preference for HCBS, they are the exception to the rule. Based on fiscal year 2011 data for older adults receiving LTSS through Medicaid, an equal share received services in a nursing home compared to receiving services through HCBS (Kaiser Family Foundation, May 2015). These reflect a significant proportion of older Americans served through institutional, rather than home and community-based settings, and much higher than the rates for younger adults with disabilities. (There are 1.4 million Medicaid participants receiving services through HCBS and only 300,000 predominantly in a nursing home or through other institutional care (Ibid.).) These high numbers persist despite personal preference. A recent AARP study found 87 percent of people over age 50 with disabilities preferred to receive assistance with daily activities in their own homes (Gibson et al., AARP, “A report to the nation on independent living and disability,” 2003).

While there has been considerable progress in increasing the amount of Medicaid LTSS provided through home and community-based settings over the last two decades, we believe more can and must be done. States have numerous options for promoting greater independence for older Americans with disabilities and LTSS needs, including new and expanded options under the Affordable Care Act: Money Follows the Person (MFP) program, Balancing Incentive Program; Health Home State Plan Amendments; Community First Choice Option; and, Independence at Home, a demonstration allowing for primary care in-the-home (CMS, “Better Care, Smarter Spending, Healthier People: Improving Our Health Care Delivery System,” January 2015). These initiatives – particularly when coupled with the new and emerging guides for state Medicaid LTSS programs and policies under the January 2014 HCBS Final Rule and May 2015 Medicaid Managed Care Proposed Rule – represent significant, meaningful opportunities to improve access, availability and quality of LTSS for older Americans. The NAB encourages the consideration by states of these opportunities and careful oversight by the Centers for Medicare and Medicaid Services (CMS) as well as stakeholders in their design and implementation.

 
•  How can we better address the costs and increasing need for long-term services and supports?
As the LTSS policy brief notes, current mechanisms for financing LTSS are limited. Significantly, both the workforce of direct care workers, and policies to support a national network of informal caregivers needed to support a growing demand for LTSS, are either nonexistent or inadequate. Perhaps even more significantly, the absence of an array of services from which older Americans can choose to live independently is likely to cause these individuals to go where the system takes them, despite what their personal preference (and the ensuring cost) may be. Finally, we are concerned that older adults and their families are, in essence, coerced into a state of poverty so that they may obtain the benefits and supportive services they need to be part of the community. These actions have the potential to create an economic impact far greater than expanding a service array for a government-funded health care program.

Moving forward, the NAB believes it is necessary to envision a future in which older adults and other users of LTSS may access the services they need to live independently, while avoiding hardship to themselves and the family. Furthermore, it is necessary to move beyond a health system that only provides treatment interventions for episodic illnesses. Instead, the United States must modernize its infrastructure to meet the holistic needs of individuals and make services and supports easily accessible for persons in need. Achieving a more balanced LTSS system for older adults and people with disabilities, we believe, is a significant measure for addressing the costs of, increasing need for, and the personal preferences of individuals requiring LTSS.

•  How can we harness technology to assist individuals with their long-term services and supports needs?
The application of modern technology in acute and long-term services is boundless and rapidly changing. Technology can assist older adults with chronic health conditions to self-monitor their health status and better manage conditions or illnesses. From a health care delivery system perspective, technology facilitates the collection of data for use in program planning, data sharing, oversight, and quality improvement and is the cornerstone of a medical home. It is used to improve communication and information sharing among the medical community and can increase continuity of care through improved care coordination. Technological advances also may enhance transportation and enable greater mobility for older adults and reduce the need to physically transport a person to a physician’s office for follow-up visits.

In this way, any conversation on technology and LTSS must include the usability of medical diagnostic equipment. For older adults, the usability of medical diagnostic equipment almost always requires another person’s intervention, usually in the form of a medical provider who operates, or oversees the operation of, the equipment. Design standards and staff training are linked. The NAB recommends staff receive information and training on working with older adults, and their family and caregivers, with a particular emphasis on communications and program access and the use of accessible equipment.

But technology to support older adults can and must extend beyond accessible equipment and information coordination and sharing. Echoed within the LTSS policy brief, the demand for personal care assistants and home health aides will increase by 71 and 69 percent, respectively, between 2010 and 2020 (Paraprofessional Healthcare Institute, February 2013; U.S. Department of Labor, January 2012). These two occupations also are among the fastest growing, with expectations of a combined 1.3 million new jobs over the same time period (Ibid.). Here, too, technology presents opportunity. The workforce shortages the nation faces for direct caregivers should compel our nation to further enhance assistive technologies (AT) that would increase independence and, thereby, decrease the reliance on human supports. We also support – in the case of state- and federal-level decision making on the role of AT – budget officers and other fiscal agents looking beyond the next fiscal year to determine the future cost savings of implementing technologies, and broadening the focus on AT beyond adults with intellectual and other developmental disabilities to include older adults and those with physical disabilities.

To support older Americans in the community as they continue to age, the NAB believes resources need to be invested in the continued research and development of technology that supports people to live independently. Specifically, we strongly support the more targeted funding of IL technology research through the National Institutes of Health, U.S. Department of Defense and Defense Advanced Research Projects Agency, National Aeronautics and Space Administration, National Institute on Disability, Independent Living, and Rehabilitation Research, and other agencies with research authority.

Maggie Ornstein

6/12/2015 4:04:39 PM

With informal family caregivers being the ‘backbone’ of long-term services and supports, it seems to me this is where major initiatives must focus.

When I was 17 years old my mother suffered from a severe traumatic brain injury. Over the past 20 years I have cared for her as well as multiple family members, ranging in age from five to one hundred years old. With this care, come the inevitable interactions with the formal long-term care system in various ways, and with myriad agencies. Through my personal experience as well as research with family caregivers, I have come to realize the abuse and neglect family members and home care workers all experience in their interactions with and through their labor within this system. Family members’ unpaid labor and home care workers underpaid labor provide the essential care and support required to keep their loved ones alive, but also keep the health care system functioning in it’s current capacity.  Through my work, I’ve come to recognize the importance of uniting these two groups of workers, who together, are heavily exploited by the health care system.   I have several comments and suggestions that focus on the plight of family caregivers, which have direct implications for the care recipients as well.

•  Recognize the work of youth caregivers (those under 18 years of age) and ensure that they and their relatives are eligible for services and support (see www.aacy.org for more information)

•  Family caregivers need direct financial assistance in order to continue to do this work. For example, social security credits, publicly funded long-term care insurance and other financial reimbursement for family caregivers is essential in order to prevent the creation of the next impoverished generation of seniors

•  There must be recognition of the ‘family unit’ and the needs of this unit, as opposed to the simplistic notion of care to one person only. For example, if a family caregiver provides extensive care to a care recipient, shouldn’t a paid caregiver be able to provide assistance to the caregiver as well as to the care recipient?  Housekeeping, cooking, laundry, these are all things that could be done for the live-in caregiver as well, to reduce their need to do this for themselves on top of the care they provide to their family member

•  Family members opt out of utilizing formal services, when at all possible. My research indicates that this is due to the invasiveness and inadequacy of services that are available. People want (and should have) control over who comes into their homes and when. As services are currently delivered, they are invasive and disrespectful of peoples’ time, schedules and needs. When formal services are in place, there needs to be mediation between families and the in-home workers in order to develop a healthy working relationship that is mutually beneficial. At present, so much management of services is required by family members that they often choose to care without any outside assistance, so as to minimize the effort needed to manage and maintain home care services

•  There is recent recognition of the positive benefits of providing care to our loved ones. Family caregivers often want to do this very difficult WORK, but do not have the adequate support to meet their own needs while caring for others. Speaking of caregiving exclusively in terms of stress and burden (“caregiver burden”) doesn’t do anyone any good. We need a more realistic and inclusive conceptualization of caregiving as a normal part of the life course, and one that has both positive and negative aspects. Care is an orientation as much as tasks and activities people do and we should encourage care through various mechanisms and in ways that provide security to caregivers as well as those in need of care  

Allicyn Wilde on behalf of the Service Employees International Union

SEIU

6/12/2015 7:03:59 PM

The Service Employees International Union would first like to thank the White House for making long-term services and supports (LTSS) and the direct care workforce in particular, a focus of the 2016 White House Conference on Aging.  As the largest single representative of direct care workers, SEIU is uniquely positioned to advocate for this particular segment of the home and community-based (HCBS)service delivery system as we represent more than 600,000 direct care home and community based workers across the country.  Our home care worker members are either employed as individual providers or employed through agencies, Centers for Independent Living, and other entities, with the vast majority of our members paid through public Medicaid funds As has become clear in the LTSS discussions that have taken place in the regional meetings, we are not alone in our concerns about the LTSS system and how it affects the workforce, and in turn, the access to and quality of the services they need.

The current LTSS system perpetuates woefully inadequate wages and benefits for workers which keeps them in poverty. At the same time we are currently facing a “care gap” that over-relies on family caregiving and ultimately forces middle-class and lower-income seniors with LTSS needs to impoverish themselves in order to receive the care they need, and the need will be great. It has been estimated that 7 of 10 Americans over age 65 will need at least 3 years of LTSS, and polls show 90% of people wish to live in their own homes as long as possible.    Without LTSS reform, the care gap will continue to grow, the availability of quality services will decrease, and we will be faced with unprecedented demand for home care without an adequate workforce to provide it. Given the critically important role of the direct-care workforce to LTSS, SEIU would like to take this opportunity to highlight workforce solutions to the questions posed in the LTSS Policy Brief.

What could be done to ensure sufficient numbers of highly qualified direct care workers for now and the future?

The demand for direct care workers is expected to grow at an unprecedented rate – 49% for personal care aides and 48% for home health aides during the next decade.   An overwhelming 97% of states have already reported "serious" or "very serious" shortages in the home care workforce.   An estimated 200,000 new LTSS workers will be required each year to meet the future needs of our growing senior population.   Poverty wages, a lack of benefits, and a lack of training are all factors that are associated with lower quality service delivery and higher turnover and vacancy rates.   The workforce providing paid LTSS is a critical link in the availability and quality of services.   If the workforce continues to be low-paid with little training, there will be little hope of meeting future demand.  Alternatively, by improving conditions, attracting workers and creating a sustainable workforce, high quality care in the home can be provided through well trained and prepared workers with quality jobs, now and into the future.

Solutions:

•  Pay a wage of at least $15 an hour as a minimum starting pay rate for home care workers.  Home care workers are paid poverty wages, $9-10 an hour and a median salary of $13,000 annually, despite being one of the country’s most highly demanded and fastest growing occupations.   Close to 50% of home care workers live in households that rely on public assistance even though they are working.  As the congressional Commission on Long Term Care noted, these factors lead to disruptions in the continuity of care that adversely affect the quality of services.    Paying home care workers a higher wage is critical to bringing people into the direct care workforce and allowing them to remain and thrive there.

•  Create basic federal home care training and competency standards for states to build upon, and provide training funding to states, and pay workers progressively higher wages that reflect that training. Medicare funded home health aides are required to complete 75 hours of training, a standard that has not been updated in over 20 years, but a standard all the same.  Medicaid home care workers, however, who provide the vast majority of hands-on LTSS, have no federally required training standards in spite of the Institute on Medicine’s recommendation to enact federal standards.  Twenty-three states have no home care training requirements of any kind, and most states that do leave training to private home care agencies with little oversight.  Federal training standards should be created as a floor, and states should be encouraged to create higher levels of training and career pathways through incentives, and making funding opportunities for training programs readily available. Cultural competency should be a focus in order to reflect the increasing diversity of our senior population.  As workers advance along their career paths, higher wages need to be tied to higher levels of training and responsibility.

•  Allow and encourage workers to have a collective voice for quality jobs and quality care.  Several states have created the means for home care workers to unionize, including Washington, Illinois, Oregon, California, and Massachusetts.  In such states, workers have been able to advocate for real change in the LTSS system.  Home care workers have made gains in their working conditions through higher wages, benefits like healthcare and paid time off, and meaningful training programs.  Through their unions workers also fight alongside their clients to win adequate funding for the systems, oppose limitations on services, and win quality improvements and rebalancing/access to home and community based services.  As a result, the LTSS systems in these states often stand in stark contrast to those whose workers have no real means to join together and thus remain isolated and marginalized. The federal government should enact measures and guidance through CMS to allow all home care workers to voluntarily contribute to professional organizations that will advocate for higher standards and quality.

What could be done to ensure an adequate workforce with the knowledge and skills needed support an increasing population of older Americans with chronic conditions and/or functional limitations?

Today, two out of every three older Americans are living with multiple chronic health conditions.  This not only costs a great deal of money – nearly 66% of the country’s healthcare budget – it places our ability to maintain independence and dignity throughout our lives at much greater risk.   As those who use long-term services and supports become older, often face chronic illnesses, and some also deal with cognitive and functional decline, the direct care workforce has an increasingly important role to play in improving quality and care delivery. Coordinating long-term services and supports with primary and acute care can reduce overall health costs and improve outcomes for seniors. Coordinated systems should utilize the caregiver workforce in innovative ways to help achieve these outcomes.

Solutions:

•  Develop payment mechanisms that reward MCOs, ACOs, and other providers to integrate and effectively utilize home care workers in coordinated care. A small pilot program in California, funded by the Tides Foundation, and run through St. John’s Well Child and Family Center – partnered with SEIU – showed the potential of integrating home care workers into care teams. The St. John’s home care pilot in California trained the home care workers of participants to become part of the patient-centered care team. The pilot showed that participants demonstrated better health (better adherence to medication, sharp rise in “healthy” days, and less utilization of acute services) and experienced better  care (higher rates of satisfaction in experience and quality of services). The pilot also showed potential to reduce health system costs due to a marked decrease in hospitalizations and emergency room visits attributable to the greater coordination of care.  

•  Provide the training and technology needed to make home care workers part of coordinated care teams.  Home care workers are a natural and consistent link to many of our seniors with functional limitations, cognitive limitations (such as dementia or Alzheimer’s), and multiple chronic conditions – and sometimes those with all three, caring for seniors in their homes for multiple days a week.  With the proper training, home care workers can serve as the “eyes and ears” of the care team, and identify and communicate small issues to the care team so they can be addressed before they escalate and become costly medical events that could have been avoided. With the right technology, even something as simple as a smart phone or tablet with the right software, this could happen in real time and all within the home.  Of course, workers participating in care teams should be adequately compensated at a higher rate to reflect the additional skills and responsibilities this crucially important work entails.

Are there current long-term services and supports programs or policies you think are the most or least effective or potentially duplicative?

•  Rebalance the LTSS system at the national level by ending the institutional bias in Medicaid.  Many states, including Oregon, Minnesota and Washington have led the way in “rebalancing” their LTSS programs – meaning access to home and community based care is facilitated and therefore utilized more frequently than institutions such as nursing homes.  Under Medicaid, every beneficiary is guaranteed access to a nursing home, but in order to provide home and community care to seniors states must jump through a variety of hoops and apply for waivers showing budget neutrality, or make special amendments to their state plan.  Medicaid policy should be restructured to put HCBS on an equal footing with institutional care. HCBS should be a guaranteed and fully funded service in every state.

•  Duplicate and provide funding for innovative training programs. The SEIU Healthcare NW Training Partnership was highlighted at the Seattle regional conference.  Voters in Washington State, overwhelmingly approved the creation and funding of this labor-management partnership,  and as a result of that – along with hard work by the state legislature and executive branch – home care workers across the state now have access to one of the most robust training programs in the country.  Through the Training Partnership workers can access training to meet the state standards, continuing education, apprenticeships for advanced training and peer mentoring, and as a result workers gain the skills and confidence they need to deliver high-quality care.   The Department of Labor and the Department of Health and Human Services should work in conjunction to replicate and scale up innovative training programs like the partnership across the country, and create or recommend steady streams of federal funding for these programs, as well as higher wage rates to reward and incentivize advanced training.

•  Invest in the infrastructure to match home care workers with those who need care.  As the Alternative Report from the Commission on Long Term Care recommended, we should broaden access to LTSS and home care services in the community by funding, and improving on one-stop shopping for services, and by improving and expanding worker registries for people not eligible for Medicaid. The report further recommends that we fully fund and implement these programs at a national level.  This would also provide family caregivers with much needed access to respite care services.

How can we better address the costs and increasing need for long-term services and supports?  

Access to LTSS is currently only guaranteed to the very rich, who can pay out of pocked, or the very poor who qualify for Medicaid.  There is no real “system” for the middle class. In the Commission on Long Term Care’s 2013 Report to Congress, the problems with LTSS funding were stated succinctly, “Paid LTSS are funded through a mix of sources with individuals and their families relying first on personal resources… and then on multiple, uncoordinated public sources all with unique requirements, most notably Medicaid, a means-tested federal-state program. Each source of funding has constraints, and their interaction leads to further problems.”   We need to fully invest in a high quality LTSS system that is available, accessible and affordable to all Americans that need it.  Medicaid provides a vast majority of paid LTSS, but Medicaid’s protections vary considerably from state to state and all too often do not adequately meet the needs of seniors, due largely to budget constraints. Additionally, eligibility for Medicaid HCBS services varies widely across states, and services vary in availability, scope and quality across states.

•  Create a social insurance LTSS benefit, such as including a LTSS benefit as part of Medicare. The recommendation of the Long Term Care Commission Alternative Report to create a social insurance program for LTSS should be adopted, particularly the recommendation to add such a benefit to Medicare.   This would be the most comprehensive solution to providing LTSS and home care to every senior that needs it in this country.

•  Strengthen and invest in the Medicaid LTSS system, and create equal access to high-quality home and community based services for everyone.  This would be achieved in part through the “rebalancing” recommendation above, but also by increasing the federal funding (and reducing the burden on states) for HCBS services through higher reimbursements, and setting mandatory quality standards and data collection.

References:

AARP Public Policy Institute. Fact Sheet: Medicaid: A Program of Last Resort for People Who
Need Long-Term Services and Supports. May 2011.

Associated Press-NORC Center for Public Research. 2013. Long Term Care: Perceptions Experiences and Attitudes among Americans 40 or Older.

Bureau of Labor Statistics.  2014.  Occupational Outlook Handbook, Accessed online April 14 2014. http://www.bls.gov/ooh/fastest-growing.htm

PHI & Direct Care Workers Ass’n of N.C.  2009. The 2007 National Survey of State Initiatives on the Direct-Care Workforce: Key Findings 2.

Genworth. The Cost of Care. 10th Edition 2004-2013.
www.genworth.com/.../cost-of-care.html

Paraprofessional Healthcare Institute (PHI) 2011 Caring in America - A Comprehensive Analysis of America’s Fastest Growing Jobs: Home Health and Personal Care Aides.

Commission on Long Term Care.  Final Report to Congress. September 2013.

Paraprofessional Healthcare Institute (PHI) 2013.  FACTS #3: America’s Direct Care Workforce.
PHI.  2011.  Caring in America - A Comprehensive Analysis of America’s Fastest Growing Jobs: Home Health and Personal Care Aides.

Commission on Long Term Care. Final Report to Congress, pp 19. September 2013.

Institute of Medicine (2008) Retooling for an Aging America: Building the Healthcare Workforce.

PHI. 2013. Personal Care Aide Training Requirements – Summary of State Findings.

US DHHS, National Center for Chronic Disease Prevention and Health Promotion.  2013.  The State of Aging in America 2013.  

White Paper: Innovations in Homecare. Better Health. Better Care Lower Costs. St. John’s Enhanced Home Care Pilot Program. September 12, 2014.

For more information on the Training Partnership, see: Choitz, Helmer and Conway. Workforce Strategies Initiative at the Aspen Institute. Improving Jobs to Improve Care. March 2015.

Commission on Long Term Care. Alternative Report: A Comprehensive Approach to Long-Term Services and Supports. September 2013.

Commission on Long Term Care.  Final Report to Congress. p. 21 September 2013.

Commission on Long Term Care. Alternative Report: A Comprehensive Approach to Long-Term Services and Supports. September 2013.

Id.

Amy Gotwals

National Association of Area Agencies on Aging (n4a)

6/12/2015 8:35:08 PM

Area Agencies on Aging and other Aging Network entities are crucial in providing cost-effective, consumer-directed long term services and supports. The vision and mission of the Older Americans Act when it was signed into law 50 years ago was, and still is, to provide the supports and services to help people remain aging with dignity and independence in their homes and communities for as long as possible. OAA funding still provides a core piece funding for LTSS provided through the Aging Network, but many AAAs have had to evolve in form and function in order to continue achieving that original mission.

As the national LTSS landscape evolves to further promote and fund Medicaid home and community-based services and supports over more expensive and often unwanted institutionalization, we encourage the Administration, CMS and health care providers to recognize the value in and better engage the well-established network of community-based supports and services established by OAA. With these goals in mind, we recommend that the White House Conference on Aging focus on the following areas in adopting policy recommendations.

•  Fully engage the Aging Network in improving and expanding Medicaid Managed Care Initiatives: As a majority of states have or are rapidly moving from fee-for-service to capitated managed care models for their Medicaid programs, it is critical that the Aging Network be the bridge to integrate acute and home and community-based services (HCBS) so that the quality of LTSS for older adults and people with disabilities is not compromised. There is no “one size fits all” approach to Medicaid LTSS and, as such, mandatory managed care initiatives need to be closely monitored to ensure they do not jeopardize access and quality of care. For example, outcome measures on quality should be as or more important than cost outcomes.

Recommendation: n4a urges states and the Administration to fully engage with the Aging Network as they consider and implement such reforms. In order for reforms to be successful, we must tap the proven experience of AAAs in providing information, counseling, case management, services integration and other assistance to older adults. If there is a rush to reduce costs without careful consideration of the value provided by existing cost-efficient systems—such as AAAs managing Medicaid HCBS waivers and AAAs serving as the link between Medicaid and the nation’s non-Medicaid LTSS system—the result will fail beneficiaries, unnecessarily undermine existing successful systems, and potentially reduce the quality of care for vulnerable populations.

•  Recognize the Potential of and Increase investments in Aging & Disability Resource Centers: As noted in the LTSS policy brief, Aging and Disability Resource Centers (ADRCs) have proven to be a valuable “no wrong door” model for consumers in need of LTSS. Developed by AoA and CMS during the Bush Administration, these demonstrations were granted $50 million in mandatory funding over five years in the ACA. We believe ADRCs have proven their value and deserve a continued, stable funding source that, over time, will help grow the system nationwide.

Recommendation: n4a appreciates the President’s request of $20 million in discretionary funding for Aging and Disability Resource Center (ADRC) work in FY 2016. We call on Congress to at least restore the $10 million/year in annual mandatory funding in ACA that expired in fall 2014, whether through mandatory or discretionary channels, bringing total funding for ADRC development to at least $16 million.

•  Protect and Expand the Aging Network’s role in Veteran-Directed HCBS: The growth of the veteran aging population and the desire of veterans of all ages to self-direct their care have led to the rapid expansion of the Veteran Directed Home & Community-Based Services (VD-HCBS) Program at the Department of Veterans Affairs (VA). Area Agencies on Aging are key partners in VD-HCBS provision in many communities, and these programs have achieved nearly universally positive outcomes for participating veterans.

Recommendation: These investments must continue to ensure access to options for self-directed care, and respect veteran preference to receive HCBS over more costly, often unwanted, nursing home care. A continued role for the Aging Network is vital to ensuring continued success of these efforts.

•  Fully invest in Balancing Incentive Program and Money Follows the Person: The Medicaid Money Follows the Person (MFP) Rebalancing Demonstration Grant and the Balancing Incentive Program (BIP) have both played a crucial role in state efforts to rebalance Medicaid long-term care systems and increase access to non-institutional LTSS. According to CMS, over 40,500 people with chronic conditions and disabilities have transitioned from institutions back into the community through MFP programs as of December 2013. Additionally, BIP provides new ways for states to serve more people in home and community-based settings.

Recommendation: The ACA both strengthened and expanded MFP and created BIP, and both should be reauthorized, extended and improved to ensure Medicaid beneficiaries have access to HCBS. Furthermore, we also encourage the Administration to ensure that the full scope of the investments in both BIP and MFP are made, and that funding provided through ACA to help states rebalance long-term supports and services options is not left on the table at the end of the current authorizations.
Visit www.n4a.org to learn more about our policy recommendations!

Stephen Schmoll

Sourcewise

6/12/2015 11:18:24 PM

Medicare beneficiaries should not be forced into poverty to qualify for long term services and supports which are generally funded by Medicaid.
Because Medicaid is a joint federal/state partnership there is no uniformity among states as to what constitutes long term services and supports.  At the federal level a minimum set of long term services and supports should be developed with clear definitions.  In addition, eventually Medicare should cover long term services and supports because the majority of older Americans are not dually eligible (eligible for both Medicare and Medicaid).  Some individuals immediately distance themselves from this idea saying it will increase taxes.  That need not be the case.  All potential financing options for providing LTSS to the Medicare only population need to be explored.  To date, very little has been done in this area and states have been left on their own to offer or not offer various LTSS and almost always to a Medicaid elderly population.  This does nothing to bring these services to a middle income Medicare beneficiary and sets the stage for each state's Medicaid program to offer whatever it wants.  Like Medicare Parts A, B and D long term services and supports should be the same whether you live in New Jersey or New Mexico.  The vast majority of baby-boomers will not be Medicaid eligible and to force them into poverty to receive care is no longer acceptable.   In addition, one of the keys to the successful accessing of LTSS is having  a navigator who can help older individuals and their families maneuver through a hodge podge sysem that is fragmented and almost overwhelming even to individuals working I the field of aging.  You do not need LCSWs or MSWs to serve as navigators.  You need extremely well trained individuals who can guide an individual and his/her family through the system.  This would require extensive and consistent cross training so a navigator knew virtually all eligibility criteria for all LTSS and could facilitate a smooth movement through what is now a chaotic non-system of care.   The majority of individuals do not need psychological counseling.  They need to know where they can find ONE individual who can present a variety of options for the consumer and their family members.  This should be the goal of bringing an acceptable level of LTSS to all consumers in need.  At times, the federal government needs to establish uniform procedures as it has done with Medicare Part D.  Today we do not have 50 different part D programs.  The same should be done with LTSS.

Stephen Schmoll

Sourcewise

6/14/2015 3:53:43 PM

The majority of older persons are not eligible for Medicaid and therefore, not eligible for most LTSS.  Spending down to poverty in order to qualify for Medicaid is probably a fundamental flaw in our health care system surpassed only by the fact that Medicaid provides virtually 50 different systems of LTSS because of the individual State's involvement.

There is a role that the federal government could and should play in this.  First there needs to be a common set of long term care services and supports each with minimum standards and requirements.  Second, options need to be created to allow the Medicare only population to access these services without spending down to poverty.  Third, LTSS need to become a part of Medicare which is nationwide in scope.  For far too long we have played pilot project games, limiting waiver services to a select few and not learning much from the largely CMS funded demonstration projects.

The State and community that one lives in should not be the determining factor in who receives LTSS.  Setting higher Medicaid eligibility rates on a time limited basis is not the answer either.

LTSS needs, like Medicare Part D to become a part of Medicare Part B if we are serious about integrating outpatient medical with LTSS for the majority of Medicare only recipients.  In a tax adverse time, we need to explore other alternatives such as utilizing the Medi-gap polices to see if models of standardized LTSS can be built into each plan.  Plan one for example could provide no LTSS and the individual would, like today spend down to Medicaid eligibility levels to obtain LTSS.  The other plans could offer varying levels of LTSS so the vast majority of Medicare recipients were given choices along with associated Medi-gap price increases.

For this to work, the federal government would have to mandate that all but perhaps one of the medi-gap policies offer a level of LTSS.  It would also need to mandate that all Medicare only individuals purchase one of these supplements so the risk could be spread across a large population, the majority of whom will probably never need extensive LTSS.  Insurance carriers would then be in competition to within carefully established federal parameters offer LTSS.

We talk about consumer choice, however today when it comes to LTSS there are no real choices.  The Older Americans Act is woefully underfunded to meet the LTSS needs of a growing population.  Standards need to be established with probably the first priority being in the area of home care worker training, education and  wages.  Health care and the majority of social service workers do not accept minimum wage, no benefits and no career ladder. Yet we expect that of the individuals who are actually providing hands on care in the home.  This is unacceptable and cannot be left up to each State to remedy.  Right now, even wealthier communities are attempting to come with alternatives to the spend down model under Medicaid.  This will only fragment the LTSS system further into the haves and have nots.

A great deal of time and effort has been spent on developing LTSS for perhaps 20% of Medicare recipients who also have Medicaid.  We are ignoring the 80%.

LTSS type and availability should be universal and not subject to annual State budget cuts.  Somewhere along the way, we have lost site of the need for a major public policy change. Instead we continue to tinker on the fringes of a broken and/or inadequate system hoping against hope that there will be a break through.

Frances

6/24/2015 4:38:55 PM

There is a HUGE need for easy-to-use technology for seniors who are losing their eyesight due to AMD, diabetes, etc. My mother has AMD (Age-related Macular Degeneration) and has only peripheral vision. As a result she is now unable to use her computer, which she used to use to keep in touch with many of her long-time friends. She also used to enjoy "surfing the web". There is technology out there (screen readers) but as a sighted retired Information Technology person I find these products are prohibitively expensive AND have a rather steep learning curve. My desire is to find a product that I can figure out in 5 or 10 minutes. If I can't figure it out that fast then my 84-Y-O mom is certainly not going to have the patience to deal with it - she has told me so!
I'm also even having problems finding organizations that  offer help for low vision folks. Those that say they do have help available don't make it particularly easy to get the help - you have to practically jump through hoops of fire to get any help. VERY FRUSTRATING.

Frances

6/24/2015 4:42:18 PM

I COMPLETELY agree with you, Mr. Schmoll! We have been unable to get any help with mom's eyesight issues because she is not destitute.

Lynne Feldman

Franklin County Home Care Corporation

6/26/2015 2:13:30 PM

It is important to ensure that LTSS are not medicalized, but remain a benefit that consumers can access through independent, conflict-free care coordinators.

Brenda Cleary PhD, RN, FAAN

6/30/2015 6:31:28 PM

Many baby boomers are experiencing healthier lives than their parents. Nonetheless, an extensive report on chronic illness published in 2009 by AARP, revealed that 11 million Americans over 50 are living with five or more chronic conditions. Widespread prevalence of multiple chronic illnesses leads to a high prevalence of frailty, resulting in  the need for increasing assistance with activities of daily living, along with illness management.  Home and community based care, which is nearly always the preferred choice of this population, is expanding and should continue that trajectory. However, for multiple reasons, including the lack of a family or other personal caregiver, frailty increases the likelihood that nursing home care will eventually be required. That likelihood, within the context of the sheer numbers of the baby boom generation, will challenge the nursing home industry in the U.S. and around the globe.
With the added long term care demand driven by an exponential increase in dementia and a definitive treatment yet to be found in the 21st century are considered, a "perfect storm" is brewing. According to staggering statistics released in 2015 by the Alzheimer's Association, over 5 million people in the U.S. alone have Alzheimer’s Disease, the most common form of dementia, with a new diagnosis every 67 seconds. Alzheimer's disease is also the 6th leading cause of death in the United States and 1 in 3 seniors dies of Alzheimer's Disease or a related dementia and the only cause of death among the top 10 in the United States that cannot yet be prevented, cured or even slowed.  Personal caregivers are typically female; However, men are stepping up as caregivers due to the fact that 2/3 of Americans with Alzheimer's Disease are women.  

Few of us like to think about the concept of living out our lives in nursing home, but we are remiss if we bury our heads in the sand that care needs of extremely frail elders can get to a point where they cannot be adequately served by home care and/or assisted living communities.  It may be that there simply isn't access to a personal caregiver. It is urgent that we consider the elephant in the room, i.e., nursing home care of the future, and plan now to project the capacity needed while making nursing home quality a top priority.

Transformational change in interdisciplinary elder care practice must also continue in order for nursing facilities to successfully achieve value-driven care in an era of high demand and significant health care reform. RNs are major drivers of providing the right care in the right place by the right care provider, supporting more appropriate care and helping to control escalating costs.  Preventing unnecessary hospitalizations of nursing home residents that in addition to higher costs, often put them at greater physical and psychological risk, is one of the best examples of this concept.  

Empowering RNs in long term care will be critical to achieving the recommendations of the IOM reports on Retooling for an Aging America and the Future of Nursing, within the context of health care reform and in light of population demographics in the 21st century. But it will not be easy when at this point US nursing homes, an RN is not yet required on the premises 24-7 in all US nursing homes.

Helen McNeal

CSU Institute for Palliative Care

7/6/2015 7:40:00 PM

It’s no surprise that the title of this policy brief is Long-Term Services and Supports. Older adults frequently require ongoing services to help with both daily tasks of living. However services alone will not effectively keep people out of the hospital, away from the emergency department and in their homes, rather than a skilled nursing facility.  Older adults also need Support to maintain their independence, health and quality of life.  

Direct care workers -- home health aides and personal care aides – can greatly assist individuals with assistance with meal planning, grocery shopping, errands and other tasks – they are not trained to provide care coordination, pain and symptom management, emotional support, referrals to other home and community services or any of the other proactive services that palliative care providers deliver.  

Palliative care, which focuses on alleviating the burdens of illness and symptoms associated with treatment, benefits patients at any stage of a chronic, acute, or life-limiting illness. Palliative care is available to people who are still receiving curative treatments and is optimally provided from the point of diagnosis of a serious or life-limiting illness.

A growing body of research indicates that palliative care offered in all settings, “significantly reduces the number of hospitalizations per patient, the number of days spent in hospital, the probability of readmission, as well as hospital and/or health care costs.” , ,  A recent study found that patients discharged from the hospital who went home with palliative care had a lower probability of being readmitted to the hospital within 30 days than patients who received non-palliative home care.

Given that “long-term services and supports remain a priority,”  as the White House Conference on Aging seeks solutions to help older Americans “remain independent in the community as they age,”  it is vitally important for palliative care to be included in the discussion and final report.  

Palliative care improves the quality of life for patients and families facing serious or chronic illness — whatever the diagnosis or prognosis.  Delivered by an interdisciplinary team, it adds an extra layer of support by addressing the physical, emotional, psychosocial and spiritual concerns associated with serious and chronic conditions. Palliative care facilitates communication between healthcare providers, developing one, synthesized care plan in collaboration with the patient and family caregivers as well as primary care and specialist physicians and community service providers.  This care plan includes all medications and treatments, recent tests, details regarding advance care planning, and other vital information that all care providers need.  This comprehensive, coordinated palliative care helps individuals safely remain at home, or in the care setting of their choice.

In order to improve timely access to this essential service that improves the independence and quality of life of older Americans the following issues must be prioritized by the aging services network:

1.  Workforce Development:  As with the direct care workers, building a palliative care workforce to meet the needs of older Americans is vitally important. In order to meet the complex care needs of older adults, our country needs highly knowledgeable palliative care professionals in the core disciplines of medicine, nursing, social work, chaplaincy, pharmaceutical and associated allied health professions that comprise the expert care teams to provide care needs in communities across the country.  
2.  Access to Information and Services:  Palliative care offers benefits and services to individuals from the point of diagnosis on, yet most individuals never receive palliative care. Health care providers as well as Area Agencies on Aging and other community service providers can play a vital role in increasing awareness about this vitally important supportive service.

Addressing these two issues will greatly improve access to comprehensive palliative care that helps older Americans remain safely in their home with the services and support they need.

PEG GRAHAM

7/7/2015 12:25:21 PM

What supports will help caregivers continue to provide care while maintaining their own health and well-being?

My Mom, Margaret O'Grady Graham, passed away in 2004, and I am astounded that family caregivers do not make more of a fuss about the PHYSICAL effort associated with family caregiving. She lived with post-polio syndrome for years before passing away in 2004, and my family has taken to heart her frustrations with the traditional bedside commode.  
  
Margaret’s story is a common one:  As she found herself in her 60’s once again losing strength in her legs and no longer able to walk or stand, she had to make a tough decision:  how was she going to address her toileting needs?  Chair lift – she couldn’t stand so that wasn’t even a consideration. She rejected the idea of a lift (made her uneasy), adult diapers (not until she had no other choice), a bedpan (not much better than diapers to her) or build out the bathroom.  The layout of her house would have required a major rebuild at a time when she had neither the strength nor the inclination to be making such a large decision.    And so, she came to the transfer board/bedside commode combination.

It was the best option for her but it came with its challenges.   First off, it was impossible for her to transfer from her wheelchair to the commode so the first step was to transfer onto her hospital bed.  Then the height of her hospital bed had to be “just so” since it was impossible to manipulate the height of the commode (the pegs in the holes along the outer leg tube pre-determine the height setting).  The transfer board had to be placed “just so” and then as she inched her way across, slightly leaning a bit forward and over to get herself across, the board would sometimes move with her, causing her a great deal of frustration.  That meant that one of her 6 children had to be present to hold the board so it would not move.  

Margaret would often wonder aloud, “Why in God’s name hasn’t someone fixed this?   This is something I need to do several times a day, and if only I could raise/lower the height of the commode so I am moving at a downward incline, and if only this darned board would not move as I inch my way across . . .”  Instead, she had to wait for someone to help her.  

She was a proud woman and was very conscious of the fact that this dependency, expressed every day of her life, was disruptive to her children:  she knew that her youngest daughter, Beth, needed to be home from work no later than 5:30pm every day because that was as long as she could wait before needing to use the commode again.  And she must have heard the conversations about who was going to stay with her on weekends since her toileting needs had a very unpredictable pattern which made it hard to squeeze in the regular errands that constitute everyone’s life, the grandchildren’s soccer games and the like, since everyone had full-time jobs.

To get improvements in durable medical equipment like the bedside commode, we suggest the White House Conference on Aging expand its focus from improvements in clinical communications/coordination protocols and include a call for unique collaborations across home medical equipment manufacturers and health systems to optimize post-acute care by relieving some of the PHYSICAL effort associated with family caregiving..  

In addition, once Margaret became a wheelchair user, it was a bit of a jolt to hear from both the transport worker assigned to the ambulette and the home health aide that awaited us at her home that neither one would help transfer my Mom from the wheelchair supplied by the ambulette company to the new wheelchair we had just bought for her when we finally got her home from the hospital. They both said it was against company policy to do so. Doing it myself, I understood why: it placed quite a strain on my back and put my Mom at risk for my dropping her. That was some years ago, and I bet that this situation continues to be recreated every day in hundreds of homes throughout the country.

Same situation when we would take my Mom to the MD office when she was using a walker. After taking time off from work to take her to the doctor, I was always amazed that, despite the number of walkers, canes and slow gaits I observed in the waiting room, there were no chairs designed to make it easy for an older person to sit down/get up. If anything, the design of the chairs made it harder for them. Exacerbating this challenge was the fact that the MD office staff would not help. My Mom ended up standing while we waited which could involve a considerable amount of time. We asked a number of times for them to purchase a chair with a higher seat, but to no avail most likely because the MD would not be reimbursed for that cost. Same for the exam table, we would help her get up on the table, physician office staff refused to help.

Based on the above, our suggestion is that the design of furniture used in care settings be included as an actionable strategy for improving the caregiving experience.  In addition, combining remote patient monitoring with telehealth capabilities can eliminate the need for the MD office visit.

Wouldn't improvements in these under-appreciated areas go a long way to relieving the care burden of working adult children for aging parents?  And they would be more sustainable, since they are independent of staff turnover, staff shortages and all the other reasons why personnel-driven improvements tend to weaken over time...

LaRhae Knatterud

Own Your Future Minnesota

7/8/2015 4:13:43 PM

In an effort to address the issue of rising costs and need for long-term services and supports, Own Your Future (OYF) Minnesota is working to encourage and enable Minnesotans to create a long-term care plan, including how to pay for their care.  Own Your Future, an initiative of the Dayton Administration, has engaged in an ongoing public awareness campaign, and identified a number of affordable insurance and financial products for middle income households.  As a third component, OYF will also be evaluating ways to alter Medicaid to better incent private payment for long-term care.
Minnesota has identified two products that we believe have the potential to make long-term care services and supports more affordable for middle income individuals.  The first product is to incorporate a home and community care benefit in all newly issued Minnesota Medigap and Medicare Advantage plans.  By providing a modest home care benefit, individuals could better manage their immediate long-term care needs while staying in their own home.
The other product under development is a new insurance product that combines life insurance and long-term care insurance benefits.  This product would begin as a multi-year term life insurance product.  A portion of the premium paid would be set aside to pre-fund a long-term care insurance benefit.  When the purchaser reaches age 65, he/she continues to pay the annual premium, but the life insurance benefit stops and the long-term care benefit begins.  Periodic opportunities to increase the level of the benefit would be available, designed in a way to prevent adverse selection.  More information is available on the Own Your Future website at http://mn.gov/dhs/ownyourfuture
It is estimated that, as the large baby boomer generation ages, over one-half will require some sort of long-term care services.  Minnesota is aiming to be a leader in addressing this demographic challenge, a state where new options can be piloted.  We welcome collaboration with all those in Minnesota and in other states as well in developing innovative policies and products to provide affordable long-term care.

Christine Taraskiewicz

7/8/2015 7:10:06 PM

It is disturbing that women have not paid enough throughout their lives to be able to afford small conveniences.

It is disturbing that placing the elderly into nursing homes or rehab is paid for but if a person wants to place a stair lift in their home in order to stay in the home, that is considered a luxury item.   I would like to see Veterans and Seniors who are on limited or fixed incomes receive assistance for the stair lifts.  

Rehab and nursing homes are filled with seniors who never get a visitor;  have food shoved into their mouths because there is not enough staff to be kind to them,  filled with very lonely, sick and disabled bodies.

I too, as a female nearing 65 will not be able to afford a 'comfortable' life.  I did not have the luxury of making more money in jobs, as men do,  throughout my life.  

Who will take care of me?

Jo Ann Jenkins

AARP

7/10/2015 10:36:11 AM

AARP is pleased to support the 2015 White House Conference on Aging (WHCoA) on July 13. Beginning with the first conference in 1961 and for each one since, AARP has offered strong support because the sessions not only shine a spotlight on issues related to aging in America but also lead to practical solutions that make life better for people as they age.

The conferences have introduced innovative ideas such as universal home design features that allow people to live at home safely and independently, and practical ideas for abolishing mandatory retirement and creating cost-of-living adjustments for Social Security payments. Many credit that first WHCoA with leading to the enactment of Medicare and Medicaid and the Older Americans Act 50 years ago this month.

Click here to see where we stand:
blog.aarp.org/.../

Steven

www.safetyinformed.org

7/13/2015 12:08:57 PM

I personally gained peace of mind simply be registering to receive reverse 911 alerts for where my parents lived.  If danger was near their residence, I was notified.  They lived 20 miles away but I have friends with older parents 2000 miles away who know they can intercede for their parents if needed.  Reverse 911, available in most communities and offers, is free and effective.

    

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