Impact feature issue on Retirement & Aging for People with Intellectual, Developmental, and Other Disabilities

As more people receiving public support are aging, it is important for policymakers, providers, and advocates to understand the unique support needs of adults as they transition to the later years. To ensure people with intellectual and developmental disabilities (IDD) receive appropriate support and planning for this transition, it is also important to review the characteristics and outcomes of older adults with IDD so that they can live their lives according to their own preferences and needs.

For nearly 25 years, the National Core Indicators team – a collaboration of the National Association of State Directors of Developmental Disabilities Services, the Human Services Research Institute, and participating states – has surveyed adults who use public disability services, families with children and adults with disabilities who use these services, and service provider agencies to generate data about the quality of life of people receiving services.

Using National Core Indicators data from the 2017-2018 In-Person Survey, this article aims to provide some insights and to identify the characteristics and outcomes of older adults with IDD who receive public support that should be useful in developing policies going forward. The in-person survey collects information from a random sample of people with IDD receiving services in states around the United States. Each state identifies at least 400 individuals to be interviewed.

The number of older adults in the NCI survey sample grew from 2,585 in 2007-2008 to 6,413 in 2017-2018. The percentage of people with IDD who are 55 and older grew by nearly four percentage points, to 25.1%, during the period.

Also noteworthy, caregivers are aging. Among caregivers who responded to the 2018-19 NCI Adult Family Survey, 64% were 55 to 74 years old, and 11% were 75 years and older. In two states, 13% of the respondents were caregivers over 75.

Many older adults with IDD have previously lived in an institution. As shown in Figure 1, 38% of people with IDD over age 75 who were living in the community had previously lived in an institution, as had 25% of those who were between the ages of 54 and 75.

	18-22	23-34	35-54	55-74	75+ years old
Lived in an institution for 1+ years	5%	5%	11%	25%	38%
Uncertain	9%	11%	15%	19%	19%
Never in institution for 1+ years	86%	84%	74%	55%	43%

Those older than 55 are also significantly more likely to live in an intermediate care facility for individuals with intellectual disabilities, nursing facility, or other institutional setting than those younger than 55. They also are significantly more likely to live in a group residential setting than an individual setting. They are less likely to live with family or parents, as family members and parents age and become unable to provide care or pass away.

	under 55 years	55-64	65-74	75+
ICF/IID nursing facility or other institutional setting	3.7%	10.6%	10.6%	13.7%
Group residential setting (e.g. group home)	25.7%	45.0%	53.5%	56.5%
Own home or apartment	16.7%	24.9%	22.7%	1.1%
Home of parents or relatives	50.0%	13.9%	7.8%	5.0%
Foster care or host home	3.8%	5.7%	55.0%	7.7%

Adults under age 55 are much more likely to have a diagnosis of autism spectrum disorder and similarly more likely to have a diagnosis of cerebral palsy when compared with the older cohorts. This finding may be linked to the expansion of state eligibility criteria to include autism and to broaden eligibility beyond intellectual disability to developmental disability. The proportion of the sample reported to have Down syndrome goes down as age goes up, which is not surprising given early onset Alzheimer’s in this group of participants and a shorter life expectancy.

	NCI male	NCI female
Under 55	60.2%	39.8%
55-64	55.3%	44.7%
65-75	51.0%	49.0%
70+	48.9%	51.1%

	Under 55	55-64	65-75	75+
Autism spectrum disorder	25.6%	7.6%	4.4%	2.3%
Cerebral palsy	16.6%	12.2%	12.7%	13.4%
Down syndrome	9.7%	7.4%	2.5%	1.1%

The incidence of cardiovascular disease, diabetes, cancer, high blood pressure, and high cholesterol among people with IDD increases as age increases. The incidence of Alzheimer’s or other dementia also increases: 19% of people over age 75 (nearly one in five) are reported to have Alzheimer’s disease or another dementia. 

People in our study who were 55 and older are significantly more likely than those who are younger to take medications for mood or anxiety disorder. Older respondents are significantly less likely to take medications in connection with challenging behaviors. As they age, they also increasingly need assistance with mobility.

Aging also means people with IDD who receive public services are less likely to work in jobs in the community or participate in community activities such as shopping and entertainment.

	under 55 years	55-64	65-74	75+
Cardiovascular disease	5.4%	11.3%	17.2%	24.8%
Diabetes	8.5%	18.3%	21.2%	23.6%
Cancer	1.3%	4.3%	6.1%	12.5%
High blood pressure	14.8%	37.7%	44.9%	49.7%
High cholesterol	13.1%	35.7%	39.4%	44.6%
Alzheimer's or other dementia	1.1%	6.4%	8.5%	19.0%

	under 55	55-64	65-74	75+
Moves self around environment without aids	81.3%	72.1%	60.1%	42.2%
Moves self around environment with aids or uses wheelchair independently	10.3%	19.0%	27.8%	42.6%
Non-ambulatory, always needs assistance	8.4%	8.9%	12.0%	15.1%

	under 55	55-64	65-75	75+
Paid community job*	18.2%	11.4%	6.2%	1.5%
Unpaid community activity	21.2%	20.9%	18.4%	15.1%
Paid facility-based activity	13.8%	17.6%	14.7%	8.0%
Unpaid facility-based activity	35.6%	46.2%	50.7%	49.3%

	under 55	55+
Shopping	90.1%	87.2%
Entertainment	75.2%	70.5%
Out to eat	86.9%	84.4%
Out to religious or spiritual practice	41.1%	38.3%

Conclusions and Recommendations

State IDD systems will increasingly face the challenges presented by a growing number of individuals who are living longer lives. The data presented here suggest that these individuals will require supports tailored to their changing needs that take into consideration their health challenges, quality of life, wellness, and community involvement.

It argues for renewed efforts to bridge the gap between systems that serve older adults and those serving people with IDD, to revise assessment protocols geared to older individuals, and to develop training for direct support professionals to better identify physical and mental health status changes.

It underscores the need to expand accessible housing through federally funded low-income rent supplements and development financing.

And it confirms the need for expanding lifespan planning tools and supported decision-making skills so older adults can make critically important life, and end-of-life, decisions.

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