The Waiting Game

On March 31, nine agencies providing services to those with intellectual and developmental disabilities in Massachusetts held a legislative breakfast in Peabody. Several people directly affected by the state’s inadequate services spoke at the event. Some people have spent years waiting for services.

Nationwide, there is not enough support for disabled people and their families. Some families decide to place their loved ones in residential settings such as group homes because of inadequate support in the home.

Unfortunately, abuse is common in residential settings. The Disability and Abuse Project, a Los Angeles-based nonprofit dedicated to eliminating physical, sexual, and emotional abuse of people with developmental or intellectual disabilities, gathered vital data on the subject. During a nationwide survey, they received almost 7,200 replies.

According to the survey’s findings, 70% of people with developmental disabilities living in group homes had experienced physical or sexual abuse, neglect, or violence. More over 50% of these people claimed to have experienced physical abuse, and 41% claimed to have experienced sexual abuse. Additionally, those with intellectual and developmental disabilities are seven times more likely to be sexually abused than non-disabled people.

Disabled people can live in the community with enough support. However, home and community based services are severely underfunded. Institutional care is much more expensive than care in the community.

According to The Balance, nursing home care costs an average of $7,756 per month for a semi-private room. The average monthly cost for a private room is $8,821. In other words, if I lived in a nursing home with a private room for ten years, it would cost the state of Massachusetts over a million dollars.

There are 820,000 disabled people home and community-based services across the country. In some states, people are on waiting lists for more than a decade.

In North Carolina, for example there are 16,439 people on the “Registry of Unmet Needs,” the waiting list for placement on the Innovations Waiver. There are currently 14,138 spots on the waiting list. They are filled with an average wait time of five to ten years.

According to Kaiser Family Foundation data, people with intellectual and developmental disabilities waited an average of 67 months before receiving services. In comparison, the average wait in other populations was approximately 45 months.

Medicaid waivers can provide a range of services. Examples of covered services under a Medicaid waiver include hospice care, home delivered meals, home modifications, durable medical equipment, home healthcare, and therapy services including physical, occupational and, speech therapies.

Medicaid’s home and community-based services allow people with disabilities to live at home instead of in an institutional setting. Medicaid is a lifeline for so many people like me. People’s lives depend on Medicaid. Medicaid needs to be expanded because care can’t wait.


“2023 Northeast Human Service Advocacy Legislative Breakfast: The Weight of Waiting.” Northeast Arc, Northeast Arc, 6 Mar. 2023,

Donnelly-DeRoven, Clarissa. “Low Pay, No Space for Advancement: Why the Workers Who Support People with Disabilities Are Leaving.” North Carolina Health News, North Carolina Health News, 13 Feb. 2023,

Diament, Michelle. “Lawmakers Revive Effort to Prop up Disability Services.” Disability Scoop, Disability Scoop, 27 Jan. 2023,

Diament, Michelle. “Community-Based Services Should Be Mandatory Medicaid Offering, Federal Agency Says.” Disability Scoop, Disability Scoop, 12 Dec. 2022,

“Home- and Community-Based Services.” Centers for Medicare & Medicaid Services, United States Department of Health and Human Services,

O’Malley Watts, Molly, et al. “A Look at Waiting Lists for Home and Community-Based Services from 2016 to 2021.” Kaiser Family Foundation, Kaiser Family Foundation, 28 Nov. 2022,

Parker, Tim. “The Median Cost of a Nursing Home.” The Balance, The Balance, 25 Oct. 2021,

Shapiro, Joseph. “The Sexual Assault Epidemic No One Talks About.” NPR, NPR, 8 Jan. 2018,

Parker, Tim. “The Median Cost of a Nursing Home.” The Balance, The Balance, 25 Oct. 2021,

“Vulnerable Children and Adults in Group Homes Face Risk of Abuse.” The Yost Legal Group, 10 July 2019,

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