The Breakthrough
A Short History of HCBS in Michigan
Written by DNWML Community Engagement Coordinator, Eliot Carter
HCBS, which stands for “home- and community-based services,” are essential to independent living. Disability Network Washtenaw Monroe Livingston (DNWML) formed as the Ann Arbor Center for Independent Living back in 1976, when the concept of Centers for Independent Living (CILs) was less than 10 years old. Before CILs, most disability organizations were either focused on one medical category of disability or were focused on how people without disabilities could help people with disabilities. But in the 1960s, people with different types of disabilities were beginning to work together to advance disability rights. Back then, people of all kinds of disabilities were often told they couldn’t go to school, make friends, get jobs, or even live alongside people who didn’t have disabilities. They were often kept apart from their community by either being stuck in the home or sent to live in an institution.
But some people with disabilities were given a chance to show what they could achieve. They helped prove to others that even if people with disabilities needed help with some parts of their daily life, they still had the capability to work, go to school, socialize, problem-solve, and be successful. A great example of this is Ed Roberts. He had post-polio syndrome, which meant he used a wheelchair to get around and had to spend a lot of time in a medical device called an iron lung to help him breathe. He got accepted to go to college at the University of California Berkeley, and he made friends, went to classes, and became an advocate for himself and other students with disabilities. Having a personal care attendant made it possible to do these things in a school that wasn’t designed for people with disabilities in mind. Ed and his fellow advocates helped make lists of personal assistants who could help students with disabilities on campus. Personal assistants are one type of HCBS that can transform the lives of people with disabilities. HCBS can also transform communities – when Ed left school, he helped found the first ever Center for Independent Living in Berkeley.1 By the mid-1970s the city was known as one of the most disability-friendly cities in the world.
HCBS works when there are enough nurses, personal assistants, job coaches, and direct care workers to help the people who rely on them. When these people are paid well, they are less likely to leave the HCBS field to find a better job. Medicaid is a major payer for HCBS. Medicaid also pays the staff that work in institutions, where people with disabilities are not free to live in the community. In fact, it is written in the law that states have to use Medicaid to pay for institutional care. States do not have this requirement with HCBS.2 This is why we and other CILs are worried about new federal policies that are designed to reduce how much states get from Medicaid – when states have less money, they may eliminate optional Medicaid programs like HCBS.
Michigan has a long history of promoting HCBS, but not a lot of people know about it. When people have something in their history they can be proud of, they are more likely to fight for its future.
Television helped people learn more about institutions and actually see inside of them. Robert F. Kennedy Sr. famously went to an institution in New York called Willowbrook in
1965 and told the press that he was horrified by what he saw. “The children live in filth, [and] many of our fellow citizens are suffering tremendously because lack of attention, lack of imagination, [and] lack of adequate manpower,” he said. He urged governments and the people of the United States to overhaul institutions to make them cleaner and more supportive.3
But advocates in Michigan wanted to do better – they wanted to get rid of the institutions and favor community-based care. People with disabilities and their parents were coming together through organizations like Arcs, the Macomb-Oakland Regional Center (MORC), and Centers for Independent Living to talk to people in Michigan’s government. MORC took the lead on building and placing people in group homes. When Medicaid dollars became available for group homes and other settings with less than sixteen people, Michigan made it a priority to move people out of institutions and into these smaller settings. Some cities tried to ban group homes, but statewide advocacy led to Michigan passing laws in 1976 that city cities cannot ban group homes that house six or fewer people.4 When HCBS became an official Medicaid program in 1983, Michigan was way ahead of other states when it came to providing supportive services outside of institutions.
Legislators were supportive of deinstitutionalization for several reasons, but it helped that we had data to demonstrate it was cheaper for someone to receive HCBS rather than live and receive care in an institution. This is still the case. In fact, the State of the States project, which tracks the amount states spend on people with I/DD, found that when adjusted for inflation, the average HCBS waiver cost per participant has actually gone down since the 1990s – from $67,300 (in 2023 dollars) in 1993, to $51,400 in 2023.5 When legislators don’t have this context, they may look at the amount the state spends on HCBS and think the program should go away because it’s too expensive. But because Michigan moved people out of institutions earlier and more aggressively than other states, we may have forgotten how dangerous, dehumanizing, and expensive institutions were. If we forget our history, we are in danger of repeating it.
1 https://mn.gov/mnddc/parallels/6b.html
2 https://autisticadvocacy.org/actioncenter/issues/community/bias/
3 https://mn.gov/mnddc/parallels/5c.html
4 https://journals.sagepub.com/doi/abs/10.2511/rpsd.30.4.219
5 https://stateofthestates.ku.edu/sites/stateofthestates/files/2025-08/MI_8pg_accessible_0.pdf