Report: How Feds Can Improve HCBS for People With IDD

In a new report, an independent committee outlines recommended strategies for improving community integration for the more than 7 million people in the United States with intellectual and developmental disabilities (IDD).

The President’s Committee for People with Intellectual Disabilities (PCIPD) released its full report to the Biden-Harris Administration in early October, along with a one-page fact sheet. It focuses specifically on prioritizing growth of home- and community-based services (HCBS) nationwide. Its recommendations come amid a deliberate and ongoing shift away from serving people with IDD in institutional settings and instead toward a community care model.

“Institutionalization,” the authors write, “can lead to loss of independence and decreased quality of life” for people with IDD. It is “both timely and imperative,” they add, to explore ways in which the federal government can make home- and community-based services more readily available to this segment of the disability community.

The committee, which include researchers, care providers, advocates, as well as individuals with IDD and their family members, addresses four main barriers in this report:

1. A scarcity of qualified direct support professionals
    
2. Obstacles to employment
    
3. A lack of accessible community living options
    
4. Outdated and overly strict federal supports

Direct Support Professionals

Waiting lists for HCBS are notoriously lengthy. The report reiterates this, stating that nearly three-quarters of individuals on waiting lists for these services have IDD, with an average wait of 50 months. Critical shortages in HCBS staffing means that many people with IDD have no choice but to seek institutional care.

Direct support professionals (DSPs) are trained workers who often support these individuals not only with basic daily living activities but also community involvement, employment, and accommodations. They also serve as an invaluable source of respite for family caregivers.

The PCIPD makes several recommendations for expanding the DSP workforce going forward, including setting professional standards for DSPs nationally and improving wages for the DSP workforce. Its members also advocate for fostering the development of technology that can help support people with IDD who want to reside in their community as well as educating them and their families on how to access available services on their own.

Employment Opportunities

In 2023, the unemployment rate was twice as high for adults with disabilities than for those without disabilities. Many who want to work have trouble finding a job that will provide them with a competitive paid wage and advancement opportunities through competitive integrated employment (CIE). Per the report, people with disabilities who do have a job are paid less than comparable employees without a disability.

Individuals living with disabilities have a right to take part in full- or part-time work. The PCIPD cites a lack of private-sector employment opportunities for people with IDD as one obstacle on this front. The report also points out that state and federal governments are spending far less on supporting CIE opportunities than on services like IDD adult day care programs.

Among the committee’s recommendations are the following:

• federal investment in self-employment, small business development, and apprenticeship programs for people with IDD;
• a stronger enforcement of workplace anti-discrimination laws, including Title II of the Americans with Disabilities Act (ADA);
• a federally sponsored hiring campaign for people with IDD; and
• tax incentives for employers.

Community Living

From housing to transportation, many individuals with IDD face ongoing issues of access and available resources. To ensure that people with these types of disabilities can flourish in community settings, the PCIPD offers a wide-ranging list of recommendations. It urges lawmakers to:

• advocate for fair housing assistance,
• advance research efforts,
• push for the development of more accessible transportation and communications services,
• educate individuals with intellectual and developmental disabilities about their rights; and
• enact stronger protections for people with IDD.

Limited funding in these areas has, committee members write, long kept “the reality of independent living and community inclusion … out of reach for many people with IDD.”

Federal Support Programs

Lastly, the report stresses the need to enhance public assistance programs such as Supplemental Security Income (SSI) and Medicaid. For instance, the outdated rules for these means-based benefits programs can deter persons with disabilities not only from seeking employment but also marrying.

The PCIPD challenges the government to:

• Bring the SSI asset limit up from $2,000 per recipient to $10,000 or more;
• expand income and asset limits for Medicaid program eligibility; and
• end the two-year waiting period for SSDI recipients to access Medicare.

For individuals with IDD and other impairments who rely on these programs for health care and financial support, making these changes would, the report states, help promote socioeconomic independence and an improved quality of life.

Access the full report from the PCIPD in PDF format.