Photo courtesy of Sullivan County New Hampshire ServiceLink
Most of us will need long-term services and supports (LTSS), either for ourselves or our family members. However, most of us do not know about our options and how to pay for these services. That is why the LTSS State Scorecard—created by the AARP Public Policy Institute and funded by The Scan Foundation and The Commonwealth Fund—ranks states on their Aging and Disability Resource Centers. These Centers are an important feature of a high performing LTSS system.
Aging and Disability Resource Centers can serve as the gateway for helping individuals and their families find and access LTSS, including light housekeeping, transportation, and respite care to give family caregivers a break, just to name a few. States have these “one-stop-shopping” models to help people receive public and private services regardless of which organization they contact. Therefore, they are sometimes called “no wrong door.” If people contact an organization within this system, they can be connected with information, referrals, and supports, resulting in “no wrong door” to services irrespective of their age, income, or disability. Area Agencies on Aging, Centers for Independent Living, and state agencies such as Medicaid agencies and state units on aging work together to make up this no wrong door system. While the states have these centers, the operations and functions of each center vary greatly, which is why the Scorecard ranks them.
Although the previous two Scorecards included an indicator on these Centers, the upcoming third edition contains an updated indicator to reflect published guidance on key elements of no wrong door systems from the federal government. AARP, in collaboration with the U.S. Administration for Community Living and The Lewin Group, collected information for this indicator from a survey of state administrators. Then, they followed up by interviewing administrators from states that had scored well or demonstrated innovation to produce a newly released promising practices and toolkit paper on person- and family-centered practices.
This first in a series of promising practices and toolkit papers provides concrete examples of how six states—Connecticut, Michigan, New Hampshire, Virginia, Washington, and Wisconsin—plus the District of Columbia promote person- and family-centered practices in their no wrong door systems. These Centers are using an interactive process directed by individuals and family members to support decision making. They also help to develop a plan of support that reflects an individual’s and family’s strengths, preferences, needs, and values. It affirms the core principle that each person is the expert in his or her own life rather than simply plugging people into programs based on their eligibility.
The promising practices are:
- Ensuring leadership support for these practices (with examples from the District of Columbia’s mayor-led cross-population task force, Michigan’s broad support for change, and Virginia’s state legislation on this practice);
- Creating standards for these practices (with examples from Washington’s statewide standards of practice, Virginia’s co-employment model between aging and disability organizations, the District of Columbia’s intake to better listen to people and families, and Wisconsin’s follow-up);
- Training the “no wrong door” workforce (with examples from New Hampshire’s training and certification, the District of Columbia’s training for all, New Hampshire’s peer support model, Virginia’s person-centered advocates, and Connecticut’s essay exam); and
- Helping people maximize use of private resources (with an example from Wisconsin that has been a leader in serving private pay clients).
This promising practices and toolkit paper includes resources and contacts for state and federal administrators, providers, and advocates to learn about—and even replicate—these practices. This paper also provides a checklist of what is needed to move toward more person- and family-centered practices.
NOTE: The third edition of the Scorecard will be released soon … on June 14th. Promising practices and toolkits are a new feature of the Scorecard project. More papers—such as promising practices in preventing long-term nursing home stays—will be forthcoming. For the new Scorecard, the promising practices and toolkit papers, and more, please go to the LTSS State Scorecard interactive website at www.longtermscorecard.org.
Wendy Fox-Grage is a Senior Strategic Policy Advisor for the AARP Public Policy Institute. She works on state long-term services and supports issues, including Medicaid and home- and community-based services.
This week, the U.S. Senate began its consideration of the RAISE (Recognize, Assist, Include, Support and Engage) Family Caregivers Act – an important piece of legislation that would start a national conversation about ways to aid American’s greatest support system – family caregivers. Thanks to the leadership and support of Senators Susan Collins (R-ME), Tammy Baldwin (D-WI), Lisa Murkowski (R-AK), and Michael Bennet (D-CO) and Chairman Lamar Alexander (R-TN) and Ranking Member Patty Murray (D-WA) the bill was quickly approved by the Senate Health, Education, Labor and Pension Committee (which goes by the very appropriate acronym . . .HELP).
Every day, more than 40 million Americans across the country are caring for parents, spouses, children and adults with disabilities and other loved ones so they can live independently in their homes and communities for as long as possible. They manage medications, help a loved one with bathing and dressing, prepare and feed meals, arrange transportation to medical appointments (or do the driving themselves), handle financial and legal matters and much, much more. Many do all of this while working full-time and raising families.
The unpaid care family caregivers provide — a staggering 37 billion hours valued at about $470 billion annually — helps delay or prevent more costly care and unnecessary hospitalizations, saving taxpayer dollars.
I know from firsthand experience that caring for a loved one is a tremendous responsibility. As my two millennial sons and I care for my husband, their father, who has ALS, I know that, while my experience may be in some ways unique, I have much in common with my fellow caregivers. Every family caregiver I encounter – including the thousands who have shared their stories on AARP’s I Heart Caregivers – expresses a need for support, whether that means help at home, training, workplace flexibility, or the opportunity to get some relief from their caregiving responsibilities.
The RAISE Act Family Caregivers Act recognizes this tremendous need and calls for the development of a national strategy to support family caregivers, bringing together stakeholders from the private and public sectors to identify specific actions communities, providers, government, employers and others can take to make it easier to coordinate care for a loved one, get information, referrals and resources, and improve respite options so family caregivers can reset and recharge.
AARP commends the sponsors of the RAISE Family Caregivers Act — as well as the co-chairs of the bicameral, bipartisan Assisting Caregivers Today (ACT) Caucus — for their leadership on this important issue. They understand that family caregiving is not a Democratic or a Republican issue, or even an older or younger person’s issue. Recent research shows that a surprising one-quarter of Millennials are family caregivers. And, according to a poll we conducted, four-in-ten Millennials say that they are already worried about taking care of their parents on a day-to-day basis.
In fact, this is a family issue that touches us all. We are either family caregivers now, were in the past, will be in the future — or will need care ourselves one day.
Last year, we made tremendous progress on this important piece of legislation. This year, we look forward to working with the bill’s Senate and House champions – as well as other organizations that advocate for and support family caregivers as well as family caregivers themselves – to push this bill over the finish line.
Nancy LeaMond, chief advocacy and engagement officer and executive vice president of AARP for community, state and national affairs, leads government relations, advocacy and public education for AARP’s social change agenda. LeaMond also has responsibility for AARP’s state operation, which includes offices in all 50 states, the District of Columbia, Puerto Rico and the U.S. Virgin Islands.
You can follow her on Twitter @NancyLeaMond.
Photos: iStock/BraunS, iStock/ktaylorg, AARP
Having a loved one in the hospital can be a stressful and emotional experience — especially if you don’t have the support you need. Each day, 40 million family caregivers help older parents, spouses, children with disabilities and other loved ones live independently at home. They help with bathing and dressing, manage finances, stand by their loved one’s side when they go into the hospital, care for them when they return home, and so much more.
Some family caregivers, like Jerry, who cared for his wife, Faith, receive the support they need to smooth out the transition from hospital to home.
“Prior to discharge the charge nurse told me I would need to watch and listen, because I would be the caregiver at home. My wife had shoulder replacement, so I needed to know how to assist in removing and attaching the shoulder brace. She reviewed all medications with me as far as to when my wife needed to take them etc. She changed my wife’s dressing and told me to do it the same way and told me I needed to go to a pharmacy and purchase 4″ x 4″ gauze and 2 in. wide paper tape. She made sure I understood it was paper tape so the tape didn’t irritate the skin etc.”
Unfortunately, this isn’t the experience of all family caregivers.
Mary didn’t receive instructions on her mother, Eartha’s, medications after a hospital stay. After a medication that was supposed to be short term was given to Eartha long term, she suffered irreversible kidney damage. Mary was then given the choice to put her 82-year-old mother on dialysis or take her home on hospice.
When Cheryl’s husband Alphus was discharged, the family was given no instruction on the medical tasks they needed to perform, including managing multiple medications and cleaning his PICC line. Cheryl learned by trial and error — and unfortunately one of these errors led to Alphus being hospitalized, again.
The consequences can be grave when family caregivers don’t have the support they need as their loved ones go into the hospital and as they transition home.
That’s why AARP developed a model bill called the CARE Act, short for Caregiver Advise, Record, Enable Act. This commonsense, no-cost solution is now law in 32 states, D.C., Puerto Rico and the U.S. Virgin Islands. The CARE Act calls upon hospitals to:
- Record the name of the family caregiver when a loved one enters the hospital.
- Notify the family caregiver prior to the loved one’s discharge.
- Provide the family caregiver simple instruction of the medical tasks they will be performing when their loved one returns home — like managing medication.
As the 2017 state legislative sessions progress, states continue work to pass the CARE Act:
- In Kansas, Kentucky, Montana and North Dakota, the CARE Act has passed one chamber of the state legislature and is being considered by the second chamber.
- In Iowa and Missouri, the bill has been introduced in the state legislature.
- In Tennessee, regulations are in progress that would put the CARE Act into effect.
In the states that have already passed the CARE Act, we’re educating family caregivers about this new law and how it can help them when a loved one goes into the hospital. We’re also continuing our advocacy by making sure caregivers know whom to contact if their loved one doesn’t receive the benefits of the CARE Act, and we are making sure that state agencies are notifying hospitals about the law and are effectively implementing it. In addition, we’re studying how leading hospitals are putting the CARE Act into action and sharing these promising practices with others hospitals.
Stay tuned throughout the year for more updates on how the CARE Act is helping family caregivers nationwide.
Check out where your state stands
Elaine Ryan is the vice president of state advocacy and strategy integration (SASI) for AARP. She leads a team of dedicated legislative staff members who work with AARP state offices to advance advocacy with governors and state legislators, helping people 50-plus attain and maintain their health and financial security.