February 22, 2019

Aging parents of disabled adult children are feeling the strain

Thanks to a combination of improved medical treatments and the trend toward living in the community instead of institutionalization, today’s adults with intellectual and developmental disabilities are living much longer than previous generations. But with that positive trend come many challenges, including unique health and service needs, framed by the reality of their aging parents, who are still the primary caregivers for more than 75 percent of adult Americans with these disabilities. 

What will happen to all those adults with disabilities after their parents are no longer alive? Are there any government agencies or nonprofits creating new affordable housing options for this population, most of which is completely dependent on low fixed incomes from government benefits? And can the direct-service workers in group homes and other residential settings, who are typically paid minimum wages, really provide the same level of compassionate care formerly provided by the parents?

The October/November issue of AARP’s national magazine, Real Possibilities, featured a 48-year-old mother from Kansas who always takes her 19-year-old son with Down syndrome on vacations with her. Since her husband died in 2012, she is guarding her own health very closely. “I need to be an extremely feisty 80-year-old,” she is quoted as saying. “I can’t get tired of caregiving. That is not an option.”

The Family Caregiver unit at Bet Tzedek Legal Services recognized this growing problem among its own clients a few years ago  and created the Transitions Initiative to bring together professionals from both the aging and developmental disabilities sectors, which haven’t yet intersected. I helped out as a consultant and learned much from my colleagues at nonprofits and government-funded agencies that were working hard to address this issue with very limited funding and other resources. 

One of the biggest takeaways is that adults with developmental disabilities have a higher risk of developing chronic health conditions at younger ages than other adults, most notably Alzheimer’s disease. This is even more so for adults with Down syndrome because of their underlying genetic condition. In 2014, the Southland office of the Alzheimer’s Association received a three-year grant from the California Dementia Caregiver Support Project, in part, to start support groups over the phone and in person for family caregivers of people with both intellectual disabilities and Alzheimer’s disease, as well as training local providers in the developmental disabilities sector about behavior management strategies when dealing with Alzheimer’s disease. 

Parents providing extended caregiving into their own old age is beautifully explored in a new documentary titled “Mimi and Dona” (mimianddonamovie.com), in which Los Angeles-based filmmaker Sophie Sartain captures her own family’s story, shot over many years in Dallas. (Full disclosure: I helped write the program guide that accompanies the movie.) 

The filming began after Sartain’s grandmother Mimi turned 92 and finally admitted that she could no longer care for Sartain’s aunt, Dona, who was then 64 years old with a lifelong intellectual disability. Sartain’s mother, sister to Dona, submitted an application to move Dona to a state-run institution in Denton, Texas. After 64 years of living together, Mimi would have an empty nest and Dona would suddenly be on her own. As is often the case in life, the journey moves forward, and then backward, sometimes circling in on itself.

Sartain has written and produced many other well-regarded documentaries, including the 2014 documentary “Above and Beyond,” about North American pilots who flew in Israel’s War of Independence, “Hava Nagila (The Movie)” and “Blessed Is the Match: The Life and Death of Hannah Senesh,” but this is her first film about her own family. 

Since she first started filming this documentary in 2009, Sartain flew from Los Angeles to Dallas 18 times to document Mimi and Dona’s story. As she was working on the film and telling friends and acquaintances about her work, she found that many people knew someone else in the same situation, with an aging parent taking care of a middle-aged adult with some type of serious special need, whether it was mental illness, an intellectual disability or autism. As she says, “This was an untold story happening all around us, with caregivers like my grandmother facing agonizing decisions, often with little support or guidance.”

Although this issue of aging parental caregivers has yet to enter the public consciousness and is not likely to surface during any presidential debate, the documentary’s national premiere on Nov. 23 on PBS stations across the country (as part of their “Independent Lens” series) may well be the pivotal event that could propel this issue onto our collective public policy agenda.

After the Nov. 23 premiere of “Mimi and Dona,” the film will be available for free streaming for 30 days at pbs.org.

Michelle K. Wolf writes the Jews and Special Needs blog for the Jewish Journal.