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As Caregiving Parents Age, States Moving to Fund More Residential Services

August 30, 2016

By Mendy Hecht, Hamaspik Gazette

Seniors with Adult Children with Disabilities Face Waiting Lists, Fears for Future

Along with the still-growing Baby Boomer population of seniors reaching retirement age, another group of American seniors is growing in number in recent years: aging parents of children with intellectual disabilities who live with them at home.

The situations they face are dire.

Often in their late 60s but sometimes well into their 70s or 80s, these older mothers and fathers are typically the only ones providing daily care for their dependent sons or daughters.

For their part, these children with disabilities have typically lived in their parents’ homes their entire lives, remaining largely the same as siblings grew up and moved on.

And nowadays, with the passage of decades, these parents are increasingly worrying about who will care for their children when their own time comes.

An estimated 860,000 older Americans currently care for adult children with disabilities at home.

Many of those adults with disabilities are on state waiting lists for additional Medicaid services for people with disabilities, and in many states, their names often remain on those lists until caregivers fall ill or pass away—at which point they typically end up in institutions.

Since the movement away from institutions changed the country in the 1970s and 1980s, most people with disabilities and Medicaid benefits also are being cared for at home by family members.

Another watershed first came in 2013, when Medicaid spending on community- and home-based services exceeded spending on the traditional institutions, mental hospitals and nursing homes. That same year also saw 14 states reporting no large state-run institutions for people with disabilities.

Non-institutional care is significantly less expensive, research has shown.

In 2013, according to the University of Colorado, average annual institutional care costs per individual ranged from about $129,000 a year in Arizona to about $603,000 in New York.

By contrast, the average annual cost of community-based services per individual is $43,000.

Despite the progress, aging-parent caregivers face fewer residential options and longer state waiting lists today.

According to University of Minnesota research, about 198,000 people were waiting for home- or community-based services in the 34 states that reported data in 2013.  The longest waiting lists were in Ohio (41,500), Illinois (23,000) and Florida (22,400).

But as the number of American seniors providing disability home care grows, some states have passed laws giving them some choices on where, and how, the person they care for will live when they are no longer there to provide care.

A 2015 law in Tennessee ensures that anyone with an intellectual disability and a caregiver over 80 gets the services they need.  The Tennessee law was expanded in 2016 to cover caregivers over age 75.

A similar law passed by Connecticut in 2014 covers caregivers over age 70.

Other states like Pennsylvania are planning to fund more Medicaid-funded home care aide services for aging caregivers by using taxes on natural gas, tobacco and vaping.

According to Bernard Simons, a six-state disability veteran currently serving as deputy secretary for developmental disabilities in Maryland, how well a state addresses the issue depends not on its politics but on its officials’ knowledge of the issue, or how much influence is wielded by disability advocates.

When aging parents pass on or fall ill, Simons says, adult children are frequently left with no plan in place, resulting in the aforementioned institutionalization.

According to Susan Parish, director of the Lurie Institute for Disability Policy at Brandeis University, states could alleviate the growing public-policy problem by providing more services and supports to at-home family caregivers.

These supports should center on helping the aging caregiver transition out of their caregiver role—by finding their loved ones housing, money, benefits and, most importantly, a new guardian.

What the future holds for this segment of the senior population, and their beloved dependents, is uncertain.

But if the trend of senior-oriented support services continues, what’s true for Tennessee and Connecticut may become true for more states, too.

And, if the University of Colorado’s numbers hold up, that trend will be a fiscal no-brainer for the states, too.