The Aging And Disability Crisis We Can’t Afford To Ignore

The challenges facing adults with intellectual and developmental disabilities (IDD) as they age do not occur in isolation. They mirror broader demographic shifts in society. Just as the general population is living longer and grappling with questions of retirement security, caregiving, and healthcare access, the IDD community is experiencing the same pressures along with additional layers of complexity. A common experience is the struggle with housing shortages, rising healthcare costs, and overstretched caregiving networks.

These parallels remind us that the future of aging is interconnected. By designing housing, healthcare, and caregiving solutions with inclusivity in mind, we create pathways that benefit everyone. The solutions developed for people with disabilities such as integrated housing models, coordinated care systems, and family future planning can serve as models that strengthen our collective ability to age with dignity.

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Longer Lives, Unprepared Systems

Over the last half-century, life expectancy for people with IDD has increased dramatically. In the 1940s, the average life expectancy for someone with Down syndrome was just 12 years. Today, many people live into their 60s and beyond. Advances in medical care, deinstitutionalization, and greater community inclusion have fueled this transformation. However, the systems designed to support people with IDD have not kept up with this reality. Most social services were built around the assumption of a shorter lifespan for this population. As a result, housing, healthcare, and caregiving structures are not prepared, leaving aging adults with IDD and their families facing great uncertainty.

Nowhere to Go: Housing Challenges Ahead

Safe, affordable, accessible, and supportive housing remains a major challenge. Many adults with IDD live with aging parents who serve as their primary caregivers. As parents enter their 70s or 80s, that arrangement becomes increasingly difficult to maintain. Too often, there is no clear plan for what happens when parents can no longer provide support and care to their adult child with IDD. Alternatives are limited. Group homes and supported living arrangements are in short supply, with long waiting lists in most states. Meanwhile, traditional senior housing is rarely designed with people with IDD in mind, leaving older adults caught between systems.

When Family Becomes the Safety Net

Families remain the backbone of support for adults with IDD. According to The State of the States in Developmental Disabilities, about 72% of adults with IDD live with a family caregiver, and almost a quarter of those caregivers are over the age of 60. As these caregivers age, many reduce work hours or exit the workforce altogether to meet caregiving demands. This creates a double strain where families lose income and savings, while the broader economy loses experienced workers. Employers face retention and productivity challenges as caregiving responsibilities compete with workplace obligations. For businesses already navigating talent shortages, this dynamic represents a significant economic cost.

Aging Parents of People with IDD

As parents of people with disabilities age, their ability to provide daily care and long-term support naturally declines. Many parents have been primary caregivers for decades, managing everything from medical appointments to housing and advocacy. But as they enter their later years, health issues, financial pressures, and the physical demands of caregiving make it increasingly difficult to sustain the same level of involvement. These parents need more support themselves including access to respite care, financial planning resources, aging services, and coordinated systems that recognize the dual challenge of caring for their own health while ensuring stability for their adult child with a disability. Without these supports, families face mounting stress and uncertainty at precisely the time they need reassurance and stability.

Family Future Planning: The Critical Link

As people with IDD ant their family caregivers age, families are forced to face the reality of mortality. This difficult dialogue forces families to plan. Future planning ensures that the person with IDD continues to be supported in ways that honor their wishes, values, and needs. When families begin the dialogue early, they create space to share perspectives, explore options, and define roles. This process allows each family member to have a voice and a choice in the process by expressing what they feel able to contribute, what boundaries they may have, and what additional supports may be necessary.

The Role of Siblings

A common assumption is that siblings will step into greater caregiving roles once parents are no longer able to do so. However, siblings are often not asked whether they want this responsibility, nor is the individual with IDD always asked if they want their sibling in that role. Without clear communication, siblings may be unprepared, and important information may be lost in transition.

Compounding this challenge, siblings of people with IDD often juggle multiple caregiving roles simultaneously while supporting their aging parents as well as caring for their brother or sister with IDD. Further, some siblings also have their own children to support further stretching their capacity for caregiving. These responsibilities require navigating two complex systems: aging services and disability services. Too often, siblings shoulder these roles without adequate preparation or support.

Facing the Future Together

Future planning is never easy. It asks families to confront mortality, redefine roles, and wrestle with uncertainty. But the cost of avoiding it is far greater. When conversations are delayed, families are left scrambling in moments of crisis, and people with IDD risk losing the consistency, dignity, and choice they deserve. Starting early, even with one imperfect discussion, can create momentum. Each step builds clarity, reduces stress, and ensures that critical knowledge and responsibilities are shared rather than lost. Families that plan together are both better prepared as well as better at ensuring the needs of all members are addressed, especially the wishes of their family members with IDD.

The responsibility, however, cannot rest on families alone. Businesses, nonprofits, and policymakers all have a stake in building systems that match the reality of longer lives. Investing in housing, healthcare, and caregiver support is not only the right thing to do—it is fiscally responsible. By planning with the needs of all members in mind, communities can prevent crises, strengthen the workforce, and ensure that equity and inclusion guide the future of aging.

This is a content was posted by Forbes EQ, contributed by Our Place.