Crisis in Our Communities: Home and Community-Based Services For All
By: Noor Pervez, Community Engagement Manager, Autistic Self Advocacy Network
The disability community’s right to live in our own homes turns 25 this year. The Olmstead decision was passed on June 22, 1999, and said that unjustified segregation of disabled people was a violation of the ADA. In the years since its passing, access to home and community based services (HCBS) remains a legal right – but funding it is not mandatory spending, in state budgets.
That means states can decide how much money goes towards making sure disabled people have the resources to live in our own homes, rather than institutions. A number of states aren’t providing enough funding to meet demand. Waiting lists can be anywhere from years to multiple decades long, leaving people subject to the human rights abuses and major health risks associated with congregate settings.
States with more people of color are likely to have more institutions and less HCBS. Home and Community Based Services are critical, life changing supports for people with disabilities – but they’re a challenge to get and keep for disabled people of color. Take Georgia, for example.
Georgia’s population is 31% Black. A report from New Disabled South looked at racial disparities in people with intellectual and developmental disabilities (I/DD) on the waitlist for HCBS waivers. It found that 27.9% more Black Georgians were awaiting waivers compared to their white counterparts. Conversely, white Georgians make up a higher amount of the people receiving waivers. Among people with I/DD, Black Georgians are likelier to be waiting for a waiver than they are to be receiving services – on a waitlist of more than 7,000 people.
When thinking about why there might be a disparity in access to community living for disabled people of color more broadly, it’s worth connecting that issue back to other demographic issues. Consider where people of color are statistically more likely to be living right now. In general, people of color are more likely than white people to live in high poverty areas.
People living in poverty are likely to deal with the fallout from environmental racism, such as the places they live being near sources of industrial waste, which can result in long term health impacts. That means that people are likely to be getting sicker, and likelier to be institutionalized or die by the time they are reached on the waitlist.
Children on the waitlist are subject to a school system stacked against them. Average access to a high school diploma is lower for disabled people in general, and even lower for black and latinx youth with disabilities. Disabled students of color are subject to excess punishment, including suspension and use of police.
Now, consider what happens if and when disabled people receive services, all those years later. Living in the community, they’re still subject to higher risk of police brutality, higher still for disabled people of color. If they end up in jail, they can lose their services. If they’re in a poor area, there’s potential service disruptions in the case of emergencies (such as access to medical transportation) and ongoing cuts to services being debated. Getting services in the first place is hard, and surviving with them given all these additional factors is also a challenge.
This has a major impact on disabled communities of color on a number of fronts, including our culture itself. Much of direct care services (personal care attendants, home care nurses) is made up of immigrant women of color. There is a cultural narrative around people in these communities being the ones who provide care, but not about receiving it outside of the home. Some of these narratives about care that happen culturally – that family will take care of older members as they get older.
However, for people who don’t want or can’t have that arrangement, the only other option people expect to be available is a nursing home. The shortage of staff in general, and the fact that getting said services in the first place, let alone keeping them, makes it challenging to say otherwise – despite having a legal right to receive care in our own homes. Our communities are primed to not see this as a possibility, unless it’s coming from within our own homes. This is unacceptable – and it cannot change without action.
“It is vital that we fund home and community based services- for our sake, and for the sake of the next generation of disabled people of color.”
State budgets need to make spending for HCBS mandatory, and to stop cuts to services. The fight for systemic change against racism is ongoing, and must not stop until everyone’s right to live safely in our communities is met.
