The Law Will Require Development Of A Strategy To Recognize And Support Family Caregivers
In January, Congress passed and President Donald Trump signed the RAISE Family Caregivers Act. The law creates a strategy to support millions of people who help loved ones remain in their homes.
Here is what the new law will require.
- Require HHS to develop, maintain and update a National Family Caregiving Strategy, offering resources and education opportunities to family caregivers in the United States;
- Require HHS to convene a Family Caregiving Advisory Council to advise it on recognizing and support family caregivers;
- Promote greater adoption of person and family centered care in all health and long-term services and supports settings; and
- Ensure older adults with disabilities and illnesses receive high quality care in their homes.
Senators Susan Collins (R-Maine) and Tammy Baldwin (D-Wis.) and Representatives Greg Harper (R-Miss.) and Kathy Castor (D-Fla.) spearheaded the legislation.
The bill as it moved through congress was also backed by AARP. “Family caregivers are the backbone of our care system in America,” said Nancy A. LeaMond, AARP’s chief advocacy and engagement officer. “We need to make it easier for them to coordinate care for their loved ones, get information and resources and take a break so they can rest and recharge."
These family caregivers have a big job, but some basic support — and commonsense solutions — can help make their big responsibilities a little bit easier.
We are grateful to Congress and “This is forward progress, but it should not be the end of the journey. - Charles Fuschillo, Jr., President and CEO of the Alzheimer's Foundation of America
Across America, family caregivers help parents, spouses, children and adults with disabilities and other loved ones to live independently. They prepare meals, handle finances, manage medications, drive to doctors’ appointments, help with bathing and dressing, perform complex medical tasks and more — all so loved ones can live at home.
So What Will The RAISE Family Caregivers Act Really Do?
The RAISE Family Caregivers Act requires the U.S. Secretary of Health and Human Services (HHS) to develop, maintain and update an integrated national strategy to support family caregivers. According to the Act, HHS will create a national family caregiver strategy by bringing together federal agencies and representatives from the private and public sectors (like family caregivers, health care providers, employers and state and local officials) in public advisory council meetings designed to make recommendations. The agency will have 18 months to develop its initial strategy and then must provide annual updates.
So we can say that the aim of this new law is certainly needed, well intentioned and could be of great help to the 40 million family caregivers with an elder or disabled loved one at home. What could be wrong with that?
What We See Is Wrong With The RAISE Act
Funding, simply put. Implementing any national strategy will create a large cost that our polarized Congress is unlikely to fund. The RAISE Act is supposed to help family caregivers keep working outside the home. The question is: Who is going to pay for the replacement caregiver when the family caregiver goes back to work? Respite options are to be included as part of the Act. That means that the family caregiver gets time off to rest. And what happens to the elder or disabled person when the family caregiver is getting that break? Someone has to pay for the actual cost of placing the care recipient in a facility temporarily or paying someone by the hour to care for them temporarily. We have no such national programs now. Strategizing about programs is not the same as paying for programs.
Age Related Illness and Disease
Alzheimer’s disease and Dementia are affecting seniors in growing numbers. The result is literally millions of people become family caregivers and are quitting their jobs to care for their loved ones part time or full time. Passing a law requiring an integrated strategy is fine, however funding research to find a cure for the sixth leading cause of death in the U.S., Alzheimer’s disease, is hugely important. Caregiving for a loved one with Alzheimer's can last 20 years.
The RAISE Act is an important step toward more fully recognizing the impending crisis in caregiving as the aging population continues to grow. As improved guidelines and policies develop from the legislation, funding will be required to relieve the 2015 AARP estimate of $470 billion in unpaid care and the 2016 AARP estimate of $7,000 in out-of-pocket expenses provided annually by family caregivers. - Kathleen Kelly, Executive Director - Family Caregiver Alliance
We have not seen as part of this new law, any mechanism for Funding caregiver relief, disease research, housing assistance for seniors or any other important caregiver related need. Referring this lack of funding, Charles Fuschillo, Jr., President and CEO of the Alzheimer's Foundation of America is quoted in a press release from GlobeNewswire: “We are grateful to Congress and “This is forward progress, but it should not be the end of the journey.”...This encouraging development is only the tip of the iceberg. A dire need remains for the federal government to pass a Fiscal Year (FY) 2018 budget which includes $2 billion—up from the current amount of $1.4 billion—for Alzheimer’s disease research at the NIH." (National Institutes of Health).
Caregiver Training, Medical Assistance And Financial Relief
According to AARP, family caregivers “commonly experience emotional strain and mental health problems, especially depression, and have poorer physical health than non-caregivers.” And they rarely receive training in providing care.
And 78% of them incur out-of-pocket costs due to caregiving, spending $6,954 a year, on average, according to AARP. That’s estimate of $470 billion in unpaid care each year. Recognizing and strategizing about this with a new law is not the same as funding a solution.
What Concerns Me Is What’s Missing In This Law
To be effective and not just a list Advisory Councils, Strategies, and Unfunded Departments, I see several main things that could be put in place rather quickly and which would provide much needed help for families faced with a senior caregiving situation. Consider the following:
- Allow family caregivers an amount stipulated on their tax return that funds their lost wages in regards to social security. In other words fill those gap years in their ss earnings with a stipend so they do not lose benefits they will need when they themselves retire.
- Congress needs to pass a law allowing Medicaid funds to be used to pay for Adult Foster Care Homes and not just nursing homes. These homes cost on average ½ of the cost of a nursing home, which is the only option open to those whose funds have run out. The care in these homes as good and many times proven to be better than traditional nursing homes. The smaller environment can be a great benefit to patients with forms of dementia and Alzheimer’s disease and the staff to patient ratio usually much better. Just ask, me I am a huge advocate for these homes.
- Allow family caregivers who leave work to care for a loved one to draw a caregiver wage from the government if they meet certain income requirements. If a person cannot financially leave a job to care for someone, that person ends up in a nursing home and that cost the government and the economy on average 8-10,000 per month per resident! Again you could pay a family caregiver a fraction of that, save money and the patient gets better care! It’s a win win solution.
Will You Or A Loved One Need Long-Term Care One Day?
You may feel great today. On the other hand, maybe you are starting to sense the affects of ageing creeping up on you. Either way, you may not be thinking about something like Long-Term care. Not today, not for yourself. Very few people like to talk about it let alone plan for it. Yet we all should give our possible need for Long-Term care serious consideration. Why?
What is Long-Term Care?
Long-Term Care: Services that include medical and non-medical care for people with a chronic illness or disability. Long-term care helps meet health or personal needs. Most long-term care services assists people with Activities of Daily Living, such as dressing, bathing, and using the bathroom. Long-term care can be provided at home, in the community, or in a facility. For purposes of Medicaid eligibility and payment, long-term care services are those provided to an individual who requires a level of care equivalent to that received in a nursing facility. Source: Glossary - Longtermcare.gov
Here is the reality - some facts that should make us think hard about our future and whether we will need someone some day to care for us or a loved one – Long-Term Care.
According to the U.S. Department of Health and Human Services, a person turning age 65 today has almost a 70% chance of needing some type of Long-Term Care services and supports in their later years. While one-third of today’s 65 year-olds may never need Long-Term Care support, at least 20 percent will need it for longer than 5 years. And, Women on average will need care longer, 3.7 years compared to men at 2.2 years.*
According to the U.S. Census Bureau’s American Community Survey, 36 percent of people age 65 and older reported some type of disability, be it vision or hearing loss, cognition problems, difficulties moving around, or restrictions when it comes to self-care or independence, in 2014.
Nearly 40% of people age 65 and older have difficulties with the activities of daily living, such as bathing, dressing, eating, toileting, getting out of bed, getting around inside one’s home or building, or leaving one’s home or building. Currently, about one in five older people that have these types of difficulties report that they need more help than they receive (Desai et al. 2001; Spillman 2013).
Diseases that impair our ability to care for ourselves are on the rise. For example, one in nine people age 65 and older has Alzheimer’s disease according to the Alzheimer’s Association.
When older people who need assistance do not get enough help, terrible things can happen, including falls, burns, inadequate nutrition, missed physician appointments, depression, hospitalization and emergency room use.
These are just 5 reasons why all of us should be thinking about what we will do if and when we or a loved one needs Long-Term Care. We should feel compelled to give it serious thought.
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* SOURCE: Find Your Path Forward - U.S. Department of Health and Human Services
More and more of us are living longer, and we need a Long-Term care solution more than ever.
"About half of all senior citizens will need to spend about $138,000 for personal care over two years"
Yet, for one in seven, five years of care becomes necessary, and the cost "is far beyond the ability to pay.” This according to Howard Gleckman of the Urban Institute. And that five-year cost can exceed $250,000.
Now a nonpartisan group, the Long-Term Care Financing Collaborative, has called for a push for a new national universal policy for just that – Long Term Care for Seniors. The Urban Institute is a part of that Collaborative.
With a goal of getting employers to automatically enroll their employees in long-term care insurance policies at work, with employees paying regularly toward insurance from each paycheck, businesses would get insurance companies to offer long-term care insurance again after fleeing the market during the last few years, and getting people to enroll in more affordable insurance than has been offered previously.
Many Americans do not realize that Medicare and other health insurance plans will not cover long term care such as bathing, dressing and other help seniors often end up needing as they become frail or suffer debilitating diseases like Alzheimer's later in life. Referred to as ADL’s or "Activities of Daily Living", this is care that seniors and their families can be left with, often becoming a crushing financial burden.
The group emphasized that family responsibility will continue, but the collaborative wishes to lessen the burden. The Urban Institute has estimated that services delivered by family members total about $470 million each year.
"A woman in her 50s who leaves a job to care for aging parents loses an average of $300,000 in lifetime income," the collaborative reported. "Unpaid family caregivers lose an estimated $3 trillion in lost lifetime wages and benefits," while employers suffer $17 billion to $33 billion in lost productivity and absenteeism.
According to the group's research, about half of all senior citizens will need to spend about $138,000 for personal care over two years. Yet, for one in seven, five years of care becomes necessary, and the cost "is far beyond the ability to pay," said Howard Gleckman of the Urban Institute. The five-year cost can exceed $250,000.
What about Medicaid and Long-Term Care?
It’s true, regular health insurance doesn’t cover Long-Term care, and neither does Medicare. The Medicare program covers only short nursing home stays or limited amounts of home health care when a senior requires skilled nursing or rehab. It does not pay for custodial care, which includes supervision and help with day-to-day tasks. So will Medicaid fill that gap? Not necessarily. You can get help through Medicaid, the federal and state health insurance program for low-income people, but only after you’ve exhausted most of your savings, depleting a retirement nest egg quickly. The median cost of care in a semiprivate nursing home room now tops $80,000 a year, according to Genworth’s 2015 Cost of Care Survey.
And if you have to rely on Medicaid, your choices will be limited to the nursing homes that accept payments from the government program. Medicaid does not pay for assisted living in many states.
And so it is easy to understand why groups such as the The Long-Term Care Financing Collaborative see such an urgent need to address this growing problem, a lack of adequate and affordable Long-Term Care insurance. What is seen as a failure of policy makers to reach agreement on viable solutions has pushed the issue to the forefront.
Today, 10-12 million adults require supports that help them maintain the best possible quality of life, supports and services such as non-medical assistance and help with food preparation, personal hygiene, assistive devices, transportation, as well as help with activities such as bathing and eating. And the number is expected to double by 2030.
What is the Long-Term Care Financing Collaborative?
The Collaborative brings together national experts and stakeholders who cross ideological divides in pursuit of a common goal: to improve the way Americans pay and prepare for the non-medical care needed by our frail elders and people living with disabilities to live with dignity and autonomy through consensus-based, concrete policy recommendations. – Convergencepolicy.org
For more about the groups efforts, and a list of the groups participants, you can follow this link to the Long-Term Care Financing Collaborative.
Long-Term Care for Seniors is a need that is growing fast. It's good news to see this kind of effort toward finding a long term solution.