{"id":11680,"date":"2015-11-20T19:51:43","date_gmt":"2015-11-20T19:51:43","guid":{"rendered":"https:\/\/www.pbs.org\/independentlens\/?post_type=blog&p=11680"},"modified":"2023-08-03T10:05:07","modified_gmt":"2023-08-03T17:05:07","slug":"the-cost-of-love-caring-for-adults-with-intellectual-or-developmental-disabilities","status":"publish","type":"blog","link":"https:\/\/dipsy.pbs.org\/independentlens\/blog\/the-cost-of-love-caring-for-adults-with-intellectual-or-developmental-disabilities\/","title":{"rendered":"The Cost of Love: Caring for Adults with Intellectual or Developmental Disabilities"},"content":{"rendered":"

Did you know that November is National Family Caregiver Month<\/a>? (Here are some suggested ways of thanking the caregivers<\/a>\u00a0in your life.)<\/span><\/p>\n

The care of aging adults is a problem we\u00a0all face, especially\u00a0with more and more Americans living longer, but caring for adults with intellectual or developmental disabilities (I\/DD) makes the aging process all the more challenging. On the bright side, advances in treatment are helping people with I\/DD live longer, healthier lives. However, as we witness in Sophie Sartain’s touching\u00a0Mimi and Dona<\/a><\/span><\/i>, the burden of care for people with I\/DD lasts a lifetime, and w<\/span>hat if living at home is not necessarily an option?\u00a0<\/span>
\n<\/p>\n

Caring for family members with special needs is,\u00a0among other things, expensive. A recent survey by <\/a><\/span>Caring.com<\/span><\/a> found that <\/span>almost half (46%) of family caregivers spend more than $5,000 per year on caregiving expenses. (A family caregiver is defined as someone who takes care of a family member or friend, but is unpaid for their services.) Their caregiving expenses include out-of-pocket costs for medications, medical bills, in-home care, nursing homes, and more.<\/span><\/p>\n

\u201cCaregiving can be a startlingly expensive endeavor that most people aren\u2019t financially prepared for,\u201d said Caring.com CEO Andy Cohen. \u201cBut yet only three in 10 caregivers have spoken to their loved ones about how to pay for care. Having an open and honest conversation about finances is a sensitive, but necessary discussion to have.\u201d<\/span><\/p>\n

From a US News<\/em> story, “<\/span>Caring for a Sibling With Special Needs<\/span><\/a>“:<\/span><\/p>\n

A recent Easter Seals Sibling Disability Study survey reported that while 80 percent of respondents expected to eventually be their sibling’s primary caregiver, only 33 percent felt financially prepared to someday step into that role. It also noted that more than 65 million people \u2013 29 percent of the population in the United States \u2013 provide care for a chronically ill, disabled or elderly family member or friend in any given year, logging an average of 20 hours a week. Much of that care, the survey noted, is for an adult brother or sister.<\/span><\/p><\/blockquote>\n

That article posits some excellent suggestions for ways a family with a special needs sibling can plan ahead, including <\/span>setting up a special needs trust, looking into a legal guardianship, <\/b>and <\/strong>slowly easing into caregiving<\/b>.<\/p>\n

The <\/span>guide we created for the film <\/span>Mimi and Dona<\/span><\/i><\/a>\u00a0[PDF download, 2.3 MB], <\/span><\/i>written by Michelle K. Wolf and edited by filmmaker Sartain, is also an extremely useful resource to learn more about caring for people with intellectual and developmental disabilities.<\/span><\/p>\n

As is the case with residential facilities for the elderly, there are wonderful places for people with I\/DD\u00a0and then there are\u00a0others with\u00a0poor ratings for various violations. Each state should have resources available to check how a given facility has been rated and vetted. How to Check for Assisted Living Violations<\/span><\/a>\u00a0is full of state by state links for assisted living facilities in general. There they advise that if one finds their own state’s website is not up to snuff, write to state legislators to urge them to improve access to information about licensed long term care providers and their backgrounds.<\/span><\/p>\n

https:\/\/www.youtube.com\/watch?v=SVSLJyRxGJo<\/p>\n

Housing Shortages<\/b><\/p>\n

Across the United States, people with intellectual and developmental disabilities face a severe housing crisis. Many adults with I\/DD must live on Supplemental Security Income (SSI), which provides an average monthly payment of $559 for people ages 19-64. With such low monthly payments, people with disabilities are priced out of most rental housing markets. Government programs that provide subsidized housing \u2014 a subsidy that helps renters pay no more than 30% of their income for housing \u2014 such as Section 8 vouchers, are underfunded and often have long waiting lists. <\/span>There\u2019s also the problem of physical accessibility, as many apartment units have doorways that are too narrow, no elevators, and lack other accessibility features such as lowered kitchen counters and wheel-in showers. <\/span><\/p>\n

Unfortunately, there\u2019s also discrimination in the private housing market. Although federal laws prohibit discrimination in public and privately funded housing, a majority of complaints received by HUD\u2019s Fair Housing Enforcement Office are from people with disabilities. In the next decade, this housing crisis is expected to deepen, since over 850,000 people nationally with I\/DD live with an aging family caregiver over age 60 (as we see in Mimi and Dona’s story). As those aging parents become ill, frail, or pass away, their adult children are at risk of losing their homes and can be subject to institutionalization or homelessness due to the shortage of housing and support services.\u00a0<\/span><\/p>\n

Texas, for example, has one of the longest waiting lists for aid for those with intellectual disabilities, due to budget cuts. “The Waiting Game<\/a>,” a\u00a0striking, startling story in the Texas Observer<\/em> has more.<\/span><\/p>\n

As many as <\/span>73,000 Texans with intellectual disabilities<\/span><\/a> are on a waiting list to receive home- and community-based services, such as employment assistance, behavioral counseling, dental care and placement in small group homes with around-the-clock caregivers. (In contrast, at least 17 other states have waitlists with fewer than 1,000 people.) For someone signing up today, the wait to receive services could be as long as 14 years. Some people caught in limbo have families who can house and support them in the interim. Others, including Betty Calderon, make do the best they can.<\/span><\/p><\/blockquote>\n

Calderon, featured in that story, has been homeless for two years, and the man who helped protect her in homeless camps is currently in jail after trying to choke her during a fight. On top of\u00a0her intellectual disability she also has diabetes. For more on this\u00a0story, an excellent radio piece by\u00a0<\/span>Texas Standard<\/a>\u00a0is well worth the listen<\/span>:<\/span><\/p>\n