Did you know that November is National Family Caregiver Month? (Here are some suggested ways of thanking the caregivers in your life.)

The care of aging adults is a problem we all face, especially with 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 Mimi and Dona, the burden of care for people with I/DD lasts a lifetime, and what if living at home is not necessarily an option? 

Caring for family members with special needs is, among other things, expensive. A recent survey by Caring.com found that 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.

“Caregiving can be a startlingly expensive endeavor that most people aren’t financially prepared for,” said Caring.com CEO Andy Cohen. “But 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.”

From a US News story, “Caring for a Sibling With Special Needs“:

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 – 29 percent of the population in the United States – 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.

That article posits some excellent suggestions for ways a family with a special needs sibling can plan ahead, including setting up a special needs trust, looking into a legal guardianship, and slowly easing into caregiving.

The guide we created for the film Mimi and Dona [PDF download, 2.3 MB], 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.

As is the case with residential facilities for the elderly, there are wonderful places for people with I/DD and then there are others with poor 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 is 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.

Housing Shortages

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 — a subsidy that helps renters pay no more than 30% of their income for housing — such as Section 8 vouchers, are underfunded and often have long waiting lists. There’s 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.

Unfortunately, there’s 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’s 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. 

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 striking, startling story in the Texas Observer has more.

As many as 73,000 Texans with intellectual disabilities 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.

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 her intellectual disability she also has diabetes. For more on this story, an excellent radio piece by Texas Standard is well worth the listen:

Betty Calderon’s situation is certainly not unique, and Texas is not alone in having very public debates about how to get people the services they need. Connecticut is also struggling to come up with a better plan than families and caregivers say they currently have.  

Dawn DeMatteo, the single mother of an adult son with severe disabilities, told members of the legislature’s Intellectual and Developmental Disability Caucus Thursday that chronic underfunding by the state has left those who cannot care for themselves in a state of limbo with no end in sight.

According to DeMatteo, the situation became even worse when some parents like herself found out they’d become ineligible for placement at a group home once they accepted what they thought was temporary financial assistance to get by at home until a spot opened up.

The Shift Toward Private and Smaller

Tom Laing, Executive Director of InterHab in Topeka, Kansas, the oldest and largest statewide association of developmental disability service providers, spoke to us about how the landscape and philosophy regarding caring for people with I/DD has changed over the years.

“In Kansas, most facilities have been closed and replaced with private facilities often in people’s homes,” said Laing. He adds that parents of children with I/DD get advice essentially since birth, from people in the field, though that advice has changed in recent years.

“There’s been a shift in emphasis to smaller and home-based, at the urging of professionals and families,” said Laing. “The Fed began moving toward this model, allowing medicaid dollars for private facilities, whereas in the ’80s and before they could only use medicaid money for larger institutions. What still lingers is more families became identified with roles, [that] of older parent in loving environment also prevented these adult children [with I/DD] from being their own person. Sometimes that was the right thing to do but sometimes it kept them from developing their own self. It was considered the parents’ cross to bear. And there still still exists a benevolent prejudice that denies some of these people real lives.”

Laing went on to speak about how many adults with I/DD have developed skillsets and have joined workforces after receiving training. “It can be, ‘what can you do,’ instead of saying ‘you can’t do any of these things.'”

For those interested in diving deeper, Laing also recommends reading Kansas historian Dave Seaton’s fascinating if also sometimes distressing essay, The Long Road Toward “Right Thing to Do”: The Troubled History of Winfield State Hospital. It may be a Kansas story, but one that has occurred in similar fashion in many other states.

Hope and Help

Along those lines, there are great organizations across the country like The ARC, that not only help to fight for the rights of people with intellectual disabilities but also help provide job training and housing assistance, among many other things. Find a chapter in your area.

A young man with an intellectual or developmental disability hugs an older woman caregiver
Image via The ARC

Here’s one organization in Texas that is making a difference in finding homes for people with I/DD, while the Real Work Stories site is dedicated to highlighting the success stories of those who have found work and thrived.

And perhaps there will someday be more places like Village Northwest, in Iowa (suggested by one of our Facebook fans), a wonderful, engaged community for adults with I/DD.

Aging Out

Below, watch the short doc by Sophie Sartain, the filmmaker of Mimi and Dona, about two families who share what it’s like waiting for the inevitable: their disabled children aging out of school support programs.

Further Viewing (To Give You Hope)

Her Name Is Sabine
The moving story of actress Sandrine Bonnaire’s sister, a woman with autism in her late ’30s, whose growth and many talents were crushed by an improper diagnosis and inadequate care structure. After a tragic five-year stay in a psychiatric hospital, Sabine finally finds a new lease on life in a home together with other young people living with similar mental and emotional illnesses.

Brave in the Attempt
An ESPN 30 for 30 presentation, this documentary tells the story of Special Olympics founder Eunice Kennedy Shriver, who took her anger over the way her intellectually disabled sister was treated and turned it into a movement that changed the world.

CARE
A documentary coming out soon about the fastest-growing, but least regulated, field: caregiving.

More Resources

Some of these were mentioned above but as an easy reference, you can learn more about options for caregiving on these sites:

https://www.caring.com/about/news-room/costs-of-caregiving-2014

http://www.caregiving.org/caregiving2015/

Discuss

In the comments below, tell us about your own experiences with the care of a loved one with an intellectual or developmental disability. How does your city and your state assist, or not assist?