What Happens To Disabled Adults After Parents Death?

image of homeless man

By Kathie Easter, Staff Writer for The Carolinian

Caroline Munro’s situation sums up a problem facing the nation. Due to the effects of cerebral palsy and an intellectual disability, she is unable to speak and functions intellectually at a preschool level.

Since childhood, her mother, Beth, has fed her and cared for her, but Beth is 68 and worried about who will care for her daughter when she is no longer able to do so.

Medicaid waiver programs provide services to individuals who would otherwise be in an institution, nursing home or hospital in order to receive the long-term care they require.

In North Carolina, a variety of Medicaid waiver programs provide needed services. Caroline is currently on a waiting list in her state for additional Medicaid services for the disabled, but this list is thousands of names in length.

In numerous states, names frequently remain on the list until caregivers fall ill or die.

There are roughly 860,000 in the U.S. who are over 60, and are the primary caregivers for a child, sister or brother who has an intellectual or developmental disability (IDD). The services needed include help in obtaining placement in a group home, or transportation or day services, and so forth.

There are no figures for African-Americans and disabilities as compared to the general population, but those needing such help tend to be lower-income and with fewer resources to handle IDD needs themselves.

It may be years before these services are provided and, in the meantime, caregivers are aging. Frequently, caregivers are aging grandparents. The incidence of IDD is more prevalent among families living in poverty and in single-parent households.

In the 1970s and 80s, a movement swept the country in which people with disabilities were deinstitutionalized, which resulted in care for individuals with disabilities who receive Medicaid being delivered by family members within their homes.

By 2013, 14 states no longer had any sizeable, state-run institutions for individuals with intellectual or developmental disabilities, and numerous other states possessed only a few of these institutions, according to research conducted by the University of Colorado.

Deinstitutionalized care is more personalized and has saved states a considerable amount of money. In state-run institutions, the average of cost of care in 2013 was between $129,000 annually in Arizona to $603,000 in New York, while the average cost of community-based services, nationally, was $43,000.

The longest waiting list is in Ohio (41,500), Illinois (23,000), and Florida (22,400). In a few states, such aa California, there are no waiting lists for individuals who qualify for IDD services as they are provided by a state-run health care system, which means that these individuals, and their caregivers, are receiving the services they need.

However, April Lopez, chairwoman of California’s State Council on Developmental Disabilities, qualifies this assumption by indicating that some services are not available when they are needed. Also, California’s reimbursement rate for physicians and health facilities providing services is very low, which negatively affects the number of providers available.

Tennessee, in 2015, and Connecticut, in 2014, passed laws designed to provide older caregivers with the services they need. These laws also provide the opportunity for caregivers to decide where and how the individuals whom they care for will live after their deaths. However, the waiting lists in these states, as well as numerous others, continue to be thousands of names long.

Advocates such as Nicole Jorwic, the director of rights policy at The Arc, a national nonprofit, assert that action should be taken by the federal government to address this problem.

A suggested solution proposed in Maryland was to institute a new tax such as one of snacks or telecommunications, but every time a tax was instituted, the governor at the time redirected the money towards another purpose, according to Bernard Simons, Maryland’s deputy secretary for developmental disabilities.

In North Carolina, people with developmental disabilities are served by the Division of Mental Health, Developmental Disabilities and Substance Abuse Services, which is part of the Department of Health and Human Services.

The Innovations Waiver is the largest waiver program for individuals with disabilities administered by NC. However, caregivers can expect to wait 7–10 years to receive services under the NC Innovations Waiver, as there are currently more than 9,000 people waiting for these services. There are more than 12,000 individuals currently receiving waiver services in NC.

What happens to individuals who are IDD when their caregivers become too old, too ill or die? More than 40 percent of the country’s homeless population are individuals with disabilities and this number appears to be increasing, according to a yearly report issued by the Department of Housing and Urban Development (HUD).

In 2008, 42.8 percent of all adults using homeless shelters had disabilities, which compares with 37.1 percent in 2007. HUD officials have indicated that this increase is unusually large for a single-year change.

Among the general American adult population, the incidence of disability is 17.7 percent, which means that a significantly larger percentage of individuals with disabilities are homeless when compared to the general populace.

This is a problem that is not likely to decrease in the near future as the Center for Disease Control and Prevention (CDC) report that the incidence of developmental disabilities is increases.

Between 2014 and 2016, the prevalence of children, aged 3 to 17, with IDD increased from 5.76 percent to 6.99 percent.

This is a problem that won’t correct itself, and will certainly get worse—much worse—if government continues to turn a blind eye.