Planning for the Future: Survey Insights on Aging Caregivers and Inclusive Housing

The Inclusive Housing Coalition (IHC) has identified Aging Parent and Family Caregivers as one of its primary focus areas for advocacy and program development. In Colorado more than 72% of individuals with Intellectual and Developmental Disabilities (I/DD) including Autism live with family. More than 21,000 of those individuals live with family caregivers who are over the age of 60. This demographic reality has the potential to cause a “cliff” situation where people without an appropriate residential alternative may be forced to live in unsupportive settings or possibly even face homelessness when aging family members can no longer provide daily care.

To better understand the specific needs of these families the IHC recently conducted a survey comprehensively titled the “Future Housing and Related Support/Service Needs of Adults with an Intellectual or Developmental Disability Who Presently Live with a Parent, Sibling, or Guardian.” The central purpose of this survey was to gather actionable data about parent and self advocate concerns regarding the prospects of their children finding housing that is affordable and suitable for their needs as they transition into more independent or supported living arrangements.

Subject areas covered by the research included desired future housing arrangements, current and projected use of Medicaid services and other public resources, household financial status, and the specific type and level of support needs. We also examined the status of future housing planning and the various barriers families face when trying to obtain housing and related supports. The results demonstrate a continued and pressing need for sustained investments in supportive housing for people with I/DD.

IHC received 191 responses from parents and 10 from self advocates residing in 19 different counties across Colorado. Approximately 75% of the responses were received from Adams, Arapahoe, Boulder, Douglas, and Jefferson counties. This particular survey mostly received responses from parents of higher need individuals and self advocates who identified as having more intensive support requirements. In fact nearly 86% of respondents identified their children or themselves as having medium needs (defined as needing assistance with many or most things but able to be alone for short periods of time) or high needs (described as needing support 24 hours a day). More than 80% reported that the adult child was currently using either a Developmental Disability (DD) or Supportive Living Services (SLS) Medicaid waiver.

Importantly the survey also touched on how parents and self advocates feel about their preparedness for a future where they are no longer able to care for their adult children or themselves. Nearly 72% of respondents said they felt insecure about their preparedness for the future and were not confident and worried about the individual facing significant hardships. Moreover approximately 91% of respondents had either not planned for the future or have made a plan in which they are not confident. This is particularly concerning given the fact that just more than half of the respondents identified their current situation as either urgent or somewhat urgent.

The financial data gathered in the survey also highlights a complex challenge for housing developers and policymakers. While nearly 27% of respondents preferred not to share their annual household income status, those who did share showed a wide disparity ranging from below $20,000 to over $250,000 per year. When asked how much household income was provided specifically by the adult child with I/DD 84% said less than $20,000 per year. This data indicates that in addition to addressing a range of individual support needs we must also address a wide range of housing affordability situations to ensure equity in access.

Naturally family caregivers are primarily worried about the future physical safety and mental health of their disabled loved ones after they can no longer provide care. However the survey allowed us to dig deeper into the specific perceived barriers to accessing appropriate housing:

• Reliability of Support: 80% of respondents identified the adequacy of long term supports and services as a major barrier.

• Independent Living Skills: 80% noted a lack of specific skills required to live independently.

• Social Isolation: 76% identified the possibility of loneliness and isolation as a deterrent to moving.

• Financial Gaps: 67% identified a limited ability to pay for physical housing either privately or by supplementing government programs.

This financial concern is often connected with worries about the limited ability to pay for essential long term support including help with finances, transportation, maintenance of the dwelling, and assistance with nutrition and personal care.

The survey results reinforce what we already know to be true: more needs to be done to create long term solutions for the aging caregiver problem. We believe a good place to start is increased collaboration and coordination among the policymakers and lawmakers involved in housing and support services. The IHC suggests the creation of a dedicated task force composed of self advocates, parents, and guardians. This coalition should also include Program Approved Support Agencies (PASAs), Case Management Agencies, Community Centered Boards, housing builders, affordable housing finance agencies, and policy experts.

By bringing these diverse stakeholders to the table we can begin to design the inclusive and sustainable residential models that Colorado families are asking for. We invite you to review the full report and join us in this ongoing effort to increase housing for people with I/DD.

Please see the full report at: https://www.ihccolorado.org/adults-with-idd-survey