Families Struggle to Secure Supports for Loved Ones with Disabilities

Families Struggle to Secure Supports for Loved Ones with Disabilities

COLUMBUS, Ohio — Across Ohio and the nation, families caring for loved ones with intellectual, developmental, and other disabilities are increasingly reporting profound challenges in accessing reliable services and supports. From long waiting lists for residential and community-based programs to workforce shortages and insufficient respite, advocates and caregivers alike warn that systems designed to help families are stretched to the breaking point.

For many families, navigating the web of services — including waiver programs, in-home support, employment assistance, and therapeutic resources — has become a full-time endeavor. Parents, siblings, and guardians describe a persistent cycle of waiting, frustration, and uncertainty that affects not only individuals with disabilities but entire households.

Waiting Lists Grow Longer, Options Shrink

A primary hurdle for families is the backlog for Home and Community-Based Services (HCBS) waivers — federally supported programs that enable individuals to receive services in their homes and communities rather than institutions. Ohio’s waiver system, like many across the country, has long maintained waitlists for the Individual Options (IO), Level 1, and SELF waivers. Families report waiting years — sometimes over a decade — just to receive basic supports that would enable community living and employment.

“We’ve been on the waiver waitlist for eight years,” said one Ohio parent whose daughter has autism. “Every birthday reminder just feels heavier because we know another year has passed without the services she needs.”

DSP Shortages Create Service Gaps

Underlying the scarcity of services is a persistent workforce shortage affecting direct support professionals (DSPs), the frontline caregivers who provide daily assistance with personal care, community activities, employment supports, and more. Low wages, limited benefits, and high turnover plague the profession, leaving families in a bind.

“With few DSPs available, we struggle to schedule consistent support,” explained a central Ohio guardian. “Sometimes we lose supports at the last minute because there’s no coverage, and it falls entirely back on our family.”

State reports confirm that workforce shortages are a major factor in provider agencies’ inability to expand services, even when funding is available.

Respite and Family Caregiver Burnout

Without adequate formal supports, many families shoulder the responsibility of 24/7 care — a reality that often contributes to burnout, disrupted employment, and emotional stress. Respite services, intended to provide temporary relief for caregivers, are widely considered insufficient in scope and availability.

“I’ve had to reduce my work hours four times because I cannot find dependable respite,” one mother said. “It’s not just about needing a break — it’s about being able to keep a job and a stable home.”

Employment and Community Inclusion Barriers

Beyond basic care, families express frustration with the lack of consistent opportunities for meaningful employment, skill development, and community participation for their family members. While some individuals thrive in supported employment settings or specialized programs, availability varies widely by region.

“Everything feels incredibly fragmented,” shared a father whose son graduated from high school two years ago. “He wants to work and be part of his community, but we have to fight for every program and opportunity.”

Advocates Call for Policy and Funding Reform

Disability rights advocates argue that the struggles families face are symptomatic of broader systemic issues, including underfunded programs, bureaucratic barriers, and a failure to invest in workforce development.

“Families should not have to become experts in policy just to secure basic supports,” said an advocate with a statewide disability organization. “We need sustainable funding, competitive wages for DSPs, and streamlined access to services.”

Some policymakers have acknowledged the challenges. In recent state budget discussions, lawmakers highlighted the importance of strengthening the developmental disabilities service system, including increasing waiver slots, investing in workforce recruitment and retention, and expanding crisis and respite services.

However, families and providers caution that progress has been slow and incremental compared to the scale of need.

A Call for Community Solutions

In response to these challenges, community organizations, school districts, and local governments are exploring creative partnerships to fill support gaps — such as shared staffing pools, mobile respite teams, and employer incentive programs to attract DSPs. These efforts, while promising, often rely on temporary funding or pilot status.

For families living with the day-to-day reality of caring for a loved one with disabilities, the need is immediate.

“We love our son fiercely,” one caregiver said, “but love cannot replace access to dependable services, trained staff, and systems that actually work.”