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Older Caregivers

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of People with Intellectual & Developmental Disabilities

Authored by Elizabeth Mahar, Director of Family and Sibling Initiatives; Jennifer Sladen, Director of National Initiatives; and Casey Nitsch, Director of Corporate, Foundation, and Government Support, The Arc of the United States

Overview

Until the last part of the twentieth century, most people with intellectual and developmental disabilities (I/DD)—diagnoses including Down syndrome, autism spectrum disorder, fetal alcohol spectrum disorder, intellectual disability, and more—were typically confined to institutions. Families that had a son or daughter with these disabilities were commonly advised to put them in state hospitals or other facilities rather than raising them at home. Institutions were often brutal and abusive, and did not allow people to learn, participate in their communities, or make choices about their lives. After decades of fighting for deinstitutionalization, the vast majority of people with I/DD now live in the community. Today, about 75% of adults with I/DD live with their parents or other family members. This is an important step toward full inclusion for people with disabilities, but it also places the primary caregiving responsibility on parents and other unpaid family members. These families need encouragement and support to plan for what will happen as people with I/DD—and their caregivers—age.  

In the U.S. today, there are nearly one million households in which an adult with I/DD is living with caregivers 60 or older. Nationwide, half of caregivers are older than 50, and 10% are 75 or older. Older caregivers spend more hours providing care than younger caregivers. According to the Family and Individual Needs for Disability Supports (FINDS) survey, conducted by The Arc in collaboration with the University of Minnesota, 52% of caregivers spend at least 40 hours a week supporting their family member with I/DD—nearly double what children caring for aging parents and spouses reported in a recent National Alliance for Caregiving/AARP study.

The FINDS survey found that most caregivers have serious concerns about the future—for themselves and for their son or daughter with I/DD. The most common concerns were that once the caregiver dies or is no longer able to provide care:

  • The quality of support for the person with I/DD will go down (89%).
  • The person with I/DD will not have friends or will be socially isolated (78%).
  • No one else will provide support for the family member with I/DD (78%).
  • The person with I/DD will have to live somewhere he or she does not want to live, such as a nursing home or institution (76%).
  • The family member with I/DD will see his or her health deteriorate (74%).
  • The person with I/DD will be abused or neglected (73.0%).
  • The person with I/DD will be financially exploited (62%).

Unfortunately, more than half of these families have no plan in place for what will happen when the caregiver either passes away or is no longer able to provide care. Thirty-nine percent of caregivers cite lack of information regarding future planning and the steps involved as the greatest barrier to establishing such a plan. However, other significant barriers may be emotional, financial, cultural, or social. These include:

  • The misperception that planning is only for wealthy families. In reality, even a small amount of money left to a person with I/DD can jeopardize their eligibility for public benefits. Many powerful financial tools (like Pooled Special Needs Trusts and ABLE accounts (see details below) are available to families at all income levels.
  • The misperception that future planning is only financial or legal planning. Person-centered future planning can also ensure that individual preferences, family traditions, social connections, and other important aspects of a fulfilling personal life are respected and protected.
  • The emotional difficulty of broaching issues related to the caregiver’s own mortality. Many caregivers and their family members with I/DD have spent their entire lives together, and acknowledging that this relationship will end or change can be devastating. Moreover, it is still uncommon in many families to include anyone other than parents in planning discussions: for example, by discussing family finances and end-of-life plans with adult siblings or extended family.
  • The difficulty reaching the 75% of families that that include a person with I/DD but do not receive any disability services. Many families with aging caregivers are disconnected from both the aging and disability service systems. In some cases, these families sought services years or even decades ago, but did not receive the help or resources they needed at the time due to lack of availability or difficulty navigating the service system. As a result, they are unfamiliar with services available today and how services have changed over the past several years. Often, a bad experience with the service system decades ago creates a reluctance to explore these options until a crisis occurs. Unfortunately, once a crisis does occur, the options families have to choose specific services may be more limited than if they had been proactive.  
  • Lack of resources for the 25% of families that include a person with I/DD who does receive formal disability services. The services available through Medicaid programs vary by state, but often include supported employment, day services and programs, and other services to support community living for people with I/DD and older adults. Waiting lists for these services are common for people with I/DD. Often, a person with I/DD will be placed on a waiting list and will not receive services until his or her caregiver dies or another crisis occurs.

Aging caregivers must be supported and encouraged to plan. Planning resources and services must meet the needs of all families, including families from diverse racial, ethnic, and socioeconomic backgrounds; families where the family member or caregiver identifies as LGBTQIA; and intergenerational families, in which grandparents, parents, and children may be living with and caring for each other, or the primary caregivers may be aunts, uncles, grandparents, or even close family friends.

Current Programs, Services, and Needs

Tailored Resources: Recognizing the difficulty and importance of future planning, organizations have created online resources, trainings, and materials to assist families to plan for the future. These approaches have been successful in engaging some relatively younger caregivers, siblings, and professionals, and a portion of older caregivers. However, many aging caregivers prefer to receive information through hard-copy materials or in-person from a professional or other trusted source rather than online. It is critical that tailored offline approaches be developed to complement what is available online and to provide emotional reassurance, culturally competent information, or answers to questions that are localized and personalized.

Implementing Intensive, In-Person Future Planning Training: Another approach has been to develop structured courses for families to guide them through planning. These courses usually include multiple in-person sessions on different aspects of future planning, require the participation of multiple family members at each session, and give homework for the family to complete between sessions. While these approaches have been successful in helping families make progress in planning, they require a significant time commitment which can make participation difficult, especially in families where both the caregivers and the person with I/DD need support. These approaches also require significant effort and time for facilitators and host organizations, and must be translated if they are to reach diverse linguistic communities. As a result, these trainings can be hard to scale and costlier to sustain. It is critical to continue refining trainings for professionals and families that minimize any additional burden on their time and energy.

Engaging Siblings as Partners in Planning: The role of a sibling in the life of a person I/DD is as complex as it is meaningful. When families include siblings with and without I/DD, siblings should play a large role in future planning discussions. They often become primary caregivers once parents are no longer able to support their brother or sister with I/DD. Some older caregivers may be reluctant to start these discussions because they don’t want to burden the sibling, or because they simply assume the sibling will take over full responsibility for caregiving. As caregivers age, many siblings find themselves facing a steep learning curve to understand their brother or sister’s support needs, service history, and even habits and preferences. Too often this takes place when the caregiver, the sibling with I/DD, or both are already facing a crisis. Encouraging caregivers to give siblings an active role in planning over a lifetime can allow the sibling to better support his or her aging parents and sister or brother with I/DD. Professionals who serve older caregivers should also be prepared to support siblings transitioning to a larger caregiving role, and to inquire about siblings as possible sources of support.

Addressing Financial Planning: An important part of future planning is making sure that there are funds available to pay for the basic and supplemental needs of a person with I/DD while preserving eligibility for means-tested public benefits. It is also critical that caregivers are aware of, and apply for, these benefits. ABLE accounts and special needs trusts are options for some people with I/DD and their families to save for the future. Many times, aging caregivers are not aware of these financial tools or don’t realize these options are available to their family. When they are aware of the tools, they often are intimidating to use because they require caregivers to understand and navigate rules around federal and state tax law and the I/DD family member’s benefits. It is also important to understand what these different tools can be used for, how they work together, and which might be best for each family. A financial planner with expertise in special needs planning can help families do this. In addition:

  • Families and caregivers must be financially literate. They should have a financial plan, budget and save for expenses, and realistically assess how much support may cost over a long period of time.
  • Human services professionals who serve older caregivers should be prepared to deliver this information while also educating caregivers about how these financial vehicles may work together in a future plan. When appropriate, they should refer caregivers to professional financial planners.
  • Financial planning professionals—particularly professionals in the special needs trust industry—must be able to navigate the complexities of family situations. As mentioned, families often struggle to navigate the complexity of the tools, and to maximize their savings for the benefit of the person with I/DD.  

Grantmaker Support

In 2016 and 2017, the Retirement Research Foundation provided funding for The Arc’s Center for Future Planning to work with local human services agencies in four states to train human services professionals working with older adults and people with disabilities to identify aging caregivers who have a son or daughter with I/DD and support them to initiate planning.

As part of a larger grant program that includes adults 60 years of age and older with I/DD and their caregivers, the May and Stanley Smith Charitable Trust has been funding The Arc’s Center for Future Planning since 2014. The Trust also funds several other innovative initiatives that address challenges aging caregivers face, including the Stetson Law School Pooled Special Needs Trust Project in collaboration with other, smaller funders.

The Harry and Jeanette Weinberg Foundation, which has a strong program area on aging issues, also supports organizations that respect and promote the independence and individual choice of children and adults with intellectual and developmental disabilities. This portfolio focuses on housing, jobs, and early intervention services provided in the most integrated setting appropriate to meet individual needs.

The Peter and Elizabeth C. Tower Foundation awards grants (primarily in New York and Massachusetts) that help families understand intellectual disabilities and secure needed supports and encourage communities to embrace persons with intellectual disabilities and provide them with a full-range of support and opportunities to engage in community life.

Trending Topics

Training Professionals to Encourage Future Planning: "Future Planning" is still not a widely understood concept among families, human services professionals, or information and referral specialists. Often, a caregiver will request help with financial planning, housing, or navigating benefits but not frame this in terms of a comprehensive future plan. Information and referral specialists and human services professionals should be trained and encouraged to take this opportunity to introduce future planning in a holistic way, in addition to helping with immediate needs. The Arc’s Center for Future Planning has worked with the National Association of States United for Aging and Disability, the National Council on Aging, the National Guardianship Association, the Special Needs Alliance, the Association for Special Needs Planners, and others to train professionals who are in a position to encourage aging caregivers to plan. Building staff capacity and awareness of future planning at organizations that serve older adults is important to engaging older caregivers in planning before a crisis occurs. There are many other potential audiences for training, as well, including school staff (to encourage planning while families are younger) and other community leaders.

Collaborating with Community Leaders: To reach the 75% of caregivers not connected to the formal service system, we must build stronger partnerships with organizations outside the aging and disability communities who may be important community resources for older adults. Faith communities are one example: according to a 2013 Pew survey, 67% of Americans over age 50 pray each day. The Arc’s Center for Future Planning has engaged faith communities to share information on future planning in churches and other places of worship, and is seeking additional dialogue with faith leaders. Other groups that must be engaged in educational efforts include groups that serve diverse racial and ethnic communities, as well as groups that represent caregivers who identify as LGBTQIA.

Expanding Financial Options for Families: Successful financial planning for people with I/DD requires families and caregivers to understand the costs of supporting someone over a lifetime, restrictions about public benefits and asset limits, and the tools available to people with disabilities, like ABLE accounts and pooled special needs trusts. Caregivers must also consider the state or local service landscape, including Medicaid benefits, which are state-specific and not portable from one state to another. Since 2016, The MetLife Foundation has been providing support to develop a financial planning curriculum specifically for families that include someone with I/DD. The training has been piloted in three communities, and in 2018 The Arc’s Center for Future Planning is developing a train-the-trainer version to extend the program’s reach.

Financial planning also requires financial planning professionals—especially those in the special needs trust industry—to follow best practices. Financial planning professionals may not be able to identify and anticipate support needs, or know exactly how much those needs will cost. Many trusts run out of funds to support people with I/DD too early, leaving no resources to support their needs. The Stetson Law School Pooled Special Needs Trust Project, established in 2017, supports professionals by creating standard operating practices for special needs trusts and in particular, for pooled special needs trusts, which often serve lower-income families. The project will create an assessment tool for professionals to use to identify and anticipate support needs, and test a new model for paying for support with trust funds.

Resources

The Future is Now (DeBrine, Caldwell, Factor, Heller, Keiling & Kramer, 2009). The Future is Now is a curriculum developed by the Rehabilitation Research and Training Center on Aging with Developmental Disabilities at the University of Illinois at Chicago. The program is designed to assist aging family caregivers and adults with developmental disabilities to plan for the future when aging caregivers die or are no longer able to provide care. It received the National Alliance for Caregiving 2008 innovative program award.

The Sibling Support Project - Founded in 1990, the Sibling Support Project is a national program dedicated to the lifelong and ever-changing concerns of millions of brothers and sisters of people with special health, developmental, and mental health concerns.

Family Support and Research and Training Center (FSRTC) - The FSRTC is a collaboration of researchers and organizations focused on synthesizing and generating knowledge about the needs and experiences of families who provide support to children and adults with disabilities across the life course.

ABLE National Resource Center (ANRC) - Founded and managed by the National Disability Institute, the ANRC's goal is to provide consistent, reliable information concerning the benefits of an ABLE account, a new and critically important tool in financial planning for families that include someone with an intellectual or developmental disability.

Special Needs Alliance (SNA) – SNA is a national organization comprised of attorneys dedicated to the practice of disability and public benefits law. Individuals with disabilities, their families, and their advisors rely on the SNA to connect them with nearby attorneys who focus their practices in the disability law arena.

National Disability Institute (NDI) – The NDI’s Real Economic Impact network is dedicated to the economic advancement of people with disabilities. They provide resources and information on financial challenges that people with disabilities and families face.

 

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