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Aging Family Members Of Adult

Aging family members of adult children with disabilities struggling financially is a large issue in the United States. (Grant, 2007) Many families cannot imagine living separate from their adult child with disabilities, let alone being able to afford it. Curless (2016) shares thoughts of a father; “He can’t imagine living in a nursing home himself, much less sending his son to one” (pg. 2) This thought process is one that motivates elderly parents to care for their child with disabilities at home. There needs to be more financial support to help these families provide all the things adult children without disabilities are able to receive. (Grant, 2007) “Caring for an adult child with a disability brings multiple challenges to parents, such as additional financial burdens for treating their child’s condition, dealing with the child’s problematic behavior, and social stigma associated with disabilities”. (Jung-Hwa, Greenberg, & Seltzer, 2013) Sometimes if a caregiver must take on the role of caring for an adult child with a disability unexpectedly, it can become a financial burden on them to provide quality care for them. (Pryce, Tweed, & Hilton, 2017) Social support is frequently cited as a factor that buffers the negative outcomes associated with caregiving. (Pruchno, 2003) According to Priced Out in 2014, approximately 4.9 million non-institutionalized Americans with disabilities who rely on federal monthly Supplemental Security Income (SSI) have incomes averaging only $8,995 per year- low enough to be priced out of every rental housing market in the nation. These numbers make it almost impossible for parents to send their adult children out to live on their own. (Arch National Respite Network, n.d.) The long-term burden of caregiving places the parents at risk for poor physical and mental health as they enter old age. (Piazza, Floyd, Mailick, & Greenberg, 2014) Care-takers are making a substantial economic contribution to their community and according to Burton-Smith, the long-term welfare of many people with disabilities relies on the sustained physical, mental, social and economic well-being of these carers. (Yoong & Koritsas, 2011) This issue is one that affects so much of the United States and need to be addressed by policymakers.

Scope of the Problem good

In 2016, more than 40 million Americans had a disability (U.S. Census Bureau, 2016). As age increases, so does the percent of people with disabilities living in the U.S. (Erickson, Lee, & von Schrader, 2014) When looking at disabilities at a state level, the 2016 Disability Statistics annual report says in 2015 12.6% of people residing in Arkansas have a disability (Erickson, Lee, & von Schrader, 2014) Arkansas has the 3rd highest rate of disabled individuals in the U.S. These numbers show extensive this issue truly is, and how many families are affected in Arkansas. The U.S. rate of disabilities for ages 21-60 in 2013 was 10.8% of population compared to the AR rate of 15.8 % (Erickson, W., Lee, C., & von Schrader, 2014) The need for support in Arkansas is very large and there needs to be policies made to protect this overwhelming number of families.

Importance of Problem

It is important for aging families to have financial support to raise their adult children with disabilities because that will increase their quality of life and provide them with the resources they need whenever their parents are deceased. (Young & Koritsas, 2012) 16.9 percent of people (21-64) with disabilities are working full-time/full-year in Arkansas, and most of these individuals are living at home with their parents. (Erikson, W., Lee, C., & von Schrader, 2014) In 2013, only 19.9 percent of working-age people with disabilities in Arkansas received Supplemental Security Income payments. (Erikson, W., Lee, C., & von Schrader, 2014) A lot of these individuals are still living at home with their parents. Many parents choose to house their adult child with disabilities due to institutional care ranging from $65,000-$120,000 per year. (Special Needs Care for Adult Children: Cost of Care, 2018) The cost of institutional care makes it almost impossible for adult children with disabilities not to live with their families. The cost needs to become more affordable to allow these individuals to gain more independence and life skills.

Current Approaches and Results good

The Arkansas family caregiver support program provides care in Arkansas for family caregivers, which provides care for individuals age 60 or older (Arch National Respite Network, n.d.) Medical waivers provide the largest federal source of funding assistance for respite in Arkansas (Arch National Respite Network, n.d.) Another approach is the Family Caregiver Support Program (FCSP) which are services for family caregivers provided through local area agencies on aging (AAAs) (Family Caregiver Alliance, n.d.) All of these approaches need to be improved and new approaches need to be Implemented.

Policy Advocacy

Policy Recommendation #1- Adopt the Carers and Disabled Children Act

The Carers and Disabled Children Act is a U.K. program that assesses the needs of caregivers of children and adults with disabilities. There needs to be an adoption of a similar act here in the United States, which will increase the quality of life for elderly parents and their adult children. This act gives the carers the right to an assessment, even if the person they care for had refused one. This act also provides rights and a clear legal status to caregivers. With institutional care ranging from $65,000-$120,000 per year (Special Needs Care for Adult Children: Cost of Care, 2018), bringing this policy to the U.S. would allow families free assessments of being a caregiver for free. This would help the family and adult child well-being financially and emotionally by getting advice and help through an assessment if they choose to have one. (Combined Policy Guidance, Department of Health) This policy will provide support for families financially by providing free assessments. This policy provides emotional support as well getting check-ins and a program to turn to with any questions or problems a family might have. This policy in place will make it much easier for families to care for their adult children at home.

Policy Recommendation #2- Section 811 Supportive Housing for Persons with Disabilities

The affordability gap for people with disabilities has exponentially worsened in recent years. The Supportive Housing for Persons with Disabilities Act provides subsidies for low-income families with adult children with disabilities. (A Guide to Disabilities Rights Laws, 2017) After experimenting with this policy numerous state housing agencies have entered into partnerships with state health and human services so that people can apply for this service. (U.S Department of Housing and Urban Development, 2017) In 2014, the average rent for a one-bedroom apartment was $780 per month- or 104% of the national average monthly SSI income for beneficiaries living independently. (Public Policy and Legal Advocacy) Section 811 Supportive Housing for Persons with Disabilities availability is extremely low (Public Policy and Legal Advocacy) This program needs to be expanded so more people can participate in this. The program also needs to more affordable because for some families, Social Security is the sole income they have. They would not be able to participate in this program due to the cost.

Policy Recommendation #3- Individuals with Disabilities Education Act (IDEA)

The Individuals with Disabilities Education Act ensures all people with disabilities receive the same care and educational opportunities that people without disabilities do. Legislators have postponed this compliance date to ensure they effectively address the issue of significant disproportionality from July 1, 2020 to July 1, 2022. (n.d, U.S. Department of Education I do not see this reference in your references!) Significant disproportionality is the overrepresentation of one racial or ethnic group in education. (n.d, U.S Department of Education) The eligibility criteria and program guidelines for children with disabilities ranges from ages 3-21 (Arch National Respite Network, n.d.) This is an issue that needs to be addressed as it comes about, not postponing this important policy. A lot of families who care for adult children with disabilities depend on their educational day program while caregivers are at work. Reforming this policy would help a lot of families during the day and provide independence opportunities for the adult children with disabilities.

Call to Action

Policymakers are asked to implement policies to provide futures and continuity of care for people with disabilities. Family is often seen as a private matter in the United States. (Bogenschneider, 2014) However, a lot of families caring for adult children with disabilities depend on public policies to be able to care for their child and give them the best possible quality of life. Act now to provide financial, physical, and emotional support to aging parents, in order to help them successfully care for their adult disabled children at home.