Today, someone with down syndrome
might live up to their sixties or seventies.
– Dr. Lieke Van Heumen, PhD
Over the next decade, the size of the US population of adults with intellectual and developmental disabilities age 60 and over will increase considerably. By 2030, their numbers are expected to swell to an estimated 1.4 million due to increasing life expectancy and the aging of the baby boomer generation.
Let’s talk about the issues and challenges impacting the health and well-being of older adults with intellectual and developmental disabilities, together with this week’s special guest, Dr. Lieke Van Heumen.
- Lieke van Heumen is a Clinical Assistant Professor in the Department of Disability and Human Development at the University of Illinois at Chicago.
- Her research expertise is the aging of adults with lifelong disabilities, specifically intellectual and developmental disabilities.
- She holds a Ph.D. in Disability Studies from the University of Illinois at Chicago.
- She received both her undergraduate and master’s degrees in psychology with a specialization in gerontology from Radboud University in the Netherlands.
- Before moving to Chicago, she worked as a direct support professional and later as a psychologist in several Dutch group homes for older individuals with intellectual disabilities.
- She is a 2019-2020 Health and Aging Policy Fellow/ American Political Science Association Congressional Fellow
Part One of ‘Intellectual and Developmental Disabilities
with Dr. Lieke Van Heumen’
Developmental disability is an umbrella term that includes a lot of different disabilities that start in the developmental stage of our life. And intellectual disability is one disability that falls under that umbrella. People that have intellectual disabilities have both a significant limitation and intellectual functioning, as well as adaptive functioning and adaptive behavior.
Intellectual disability starts before the age of 18. That’s what makes it different from a traumatic brain injury that occurs later in life. People that have intellectual disabilities are also prone to develop Alzheimer’s disease and other dementia. But they will have to live their whole lives as a person with an intellectual disability.
And what you hear a lot about is that people who have Down Syndrome have a much higher probability of developing Alzheimer’s disease compared to other older adults. What’s interesting is that it’s the very first time in our history that large numbers of people with intellectual developmental disabilities live into old age.
We all live longer lives and life expectancies. And that’s the same thing for this population. But because we haven’t seen that before, we’ve not been adequately prepared. And that’s one of the main challenges that you see right now.
So, it’s the same reason that all people live longer. We have better healthcare and better social opportunities. And those have significantly impacted the lifespan of people with intellectual disabilities.
Folks that have more significant disabilities or multiple disabilities, they do not have the same life expectancy, but it’s still much longer than it was ever before.
We have to become more inclusive of everything that we do. – Dr. Lieke Van Heumen, PhD (13:14-13:17)
When we see older individuals living in group homes or other residential settings, they are supported by formal staff. And that is not the same as having the love and support of our family members and someone that could advocate for their needs.
If we look at this from a life course perspective, with adults that are now in their 60s, 70s, and 80s, they lived in a time where they had such limited opportunity. They were much more likely to be institutionalized due to lack of access to the community, to employment, and to education.
Those disadvantages accumulate to further disadvantage later in their lives and pose risks to their health and well-being in a way that’s going to be different from, let’s say, the older adults that we will have 30 or 40 years.
One thing that’s important to keep in mind is, how can we appropriately support this population? How can we engage with those experiences in a way that are meaningful? And how do we put an aging-capable spin to the services and supports that we have?
Part Two of ‘Intellectual and Developmental Disabilities
with Dr. Lieke Van Heumen’
Older people with intellectual and developmental disabilities constitute a small proportion of the general older population. This fact means there exists a danger that their specific need is neglected amid the demands of larger groups.
Individuals with intellectual and developmental disabilities are a priority population because they have, on average, twice as many health problems as those in the general community.
They often develop secondary and unique conditions related to their disabilities as they age. Because this is the first time that large numbers of people with intellectual and developmental disabilities are living into middle age and beyond, major policy issues are raised by the existence of this population.
Examples of issues relevant to older adults with disabilities are the availability of affordable residential options, long term care needs, the availability of support for family caregivers, accessible transportation, access to health care, economic stability and security, and consumer-direction in services and support.
On average, people with intellectual disabilities have twice as many health problems compared to other people.
– Dr. Lieke Van Heumen, PhD (22:11-22:17)
Here are a couple of important points
Dr. Lieke Van Heumen has highlighted:
- We need a robust and well-trained direct support workforce. There is a shortage of direct support staff across the country. There are high rates of turnover and these staff are paid low wages. Professionals in the aging and disability fields also want more training to increase their knowledge of aging and the unique supports needed by adults with I/DD in old age. The COVID-19 pandemic has caused additional challenges to direct service providers who lack the guidance and resources they need to continue to support individuals with disabilities safely.
- We need an aging focus on HBCS person-centered planning practices. It has become clear to me over and over again that older adults with I/DD are in desperate need of information about late-life opportunities. Most of the adults I have worked with over the years have minimal understanding of the life changes that may accompany the aging process, and what options are available to them to live a meaningful and self-determined life in older age. Additionally, they lack the support to make informed decisions and act upon them.
- We need to support families to plan for the future. Most individuals with intellectual and developmental disabilities live with their families. These families are most often unpaid caregivers. Families receiving little public support often come to the attention of the aging or health care network, such as through hospital discharge planning or when the parent dies, and the adult with a disability needs to move into another residence where support could be provided.
This situation can result in emergency placements and inadequate adjustment for the person with a disability, mainly if the family has not undertaken future planning. Future planning entails not only planning for residential supports, but also for financial, legal, advocacy, vocational, social, recreational, and health supports. Yet many families do not make plans, due often due to such barriers as lack of finances, lack of available options, anxiety, and procrastination.