6 minute read
Home based community settings: the difference between living in -or out- of prison
from July 19 - 25, 2021
by Suzanne Hanney
Disability Pride Parade Marshall Justin Cooper, 38, has Becker’s Muscular Dystrophy (BMD), uses a wheelchair and lives with his mother in a two-bedroom apartment in a senior building.
Yes, he says, being able to live in the community instead of in an institution is like the difference between living in – or out – of a prison. “That is a constant battle. One of the things we really want to push in our [disability] community is being able to live in the actual community,” Cooper said. “Many people live in nursing homes. Always, the goal is to get people out of those places and into being part of the community. Because they deserve to be part of the community.”
Disability rights are civil rights. “There is a photo of me holding up a sign that says ‘Disability rights are human rights',” Cooper said. “To me, that means we should be able to live in a community, should be able to have the rights everyone else has. It’s about accessibility, to be able to be seen, to be able to be heard.”
Living in the community means Cooper is also able to work as a photographer and a filmmaker, as an activist on the Disability Pride committee and behind the scenes on its website and social media. “I don’t think I would have that same opportunity if I were living in an institution and everything was controlled,” he said. “Living in the community I am able to make my own choices, whether I want to go outside, to travel, if I want to go see my friends. It’s determined by me, not by someone else.”
The wheelchair is Cooper’s one accommodation to BMD, a muscle-wasting disease that makes it difficult for him to walk. His apartment’s doors are large enough for him to maneuver the wheelchair and he uses a grab bar and shower chair in the bathroom. The building also has two elevators.
But besides accessibility, affordability is an issue. Cooper receives $794 in disability each month and works to the allowed pay limit. “Even though I have my own place, I have been living paycheck to paycheck for a very long time. That’s been the case for people with disabilities living on SSI (Supplemental Security Income). They’re actually below the poverty line.” Cooper’s mother pays part of the rent and helps him with some tasks a personal assistant would do. “I was thankfully able to find a place accessible to me and affordable. I also live with my mom. That’s something a lot of people with disabilities continue to look for. It’s been a struggle for a lot of us. We been constantly waiting for affordable housing. We see all these new condos being built that would be able to house people with disabilities. But they are not.”
Comparing institutions to prisons might be harsh, says Lore Baker, but “restrictive” could be the right word.
“Their job is to feed you three times a day and provide you the skilled services you require, not to get you into the community. If a person ever leaves the nursing facility, it’s usually because a friend checks you out and takes you to a church or family event,” said Baker, who is president/CEO of the Association for Individual Development (AID) in Aurora.
AID serves over 5,600 children and adults with developmental, intellectual, physical or mental health challenges; it supports over 1,000 individuals living in their own apartments and more than 200 persons in group homes throughout the Fox Valley.
The real issue is integration and fairness, she said. “not locking away people with disabilities so the only service they can get is in an institution. It’s much cheaper and also what people want. It is absolutely a civil right, your right as a human being to be able to afford to live someplace safe and decent, to be able to interact, not to be locked away.”
Community-based living is also required by the U.S. Supreme Court’s Olmstead decision, which says that people with disabilities should be housed in the “least restrictive environment.” Baker explained it as “having the opportunity to live like anyone else who does not have a disability: to volunteer, work, live, love and laugh rather than in a forced group setting away from everyone else.”
According to ADA.gov, the Supreme Court based its decision on two “evident judgments:”
• that segregating people with disabilities in institutions perpetuates the falsehood that they are unworthy or incapable of community life
• that confinement diminishes disabled people’s lives in terms of family relations, work and education options, economic independence, and more.
Cooper has built a “fairly integrated life,” Baker said, “but precariously balanced on a family member. When his mother does pass away, will he find affordable housing, will it be accessible? How quickly will he be able to access that support for physical assistance that he needs for daily living?” Thousands of disabled Illinoisans who depend on family caregivers are in the same situation, she said.
On Jan. 16, 2014, the Centers for Medicaid and Medicare Services (CMS) issued new federal regulations for state-provided Home and Community-Based Services (HCBS). The intent of the new regulations was to ensure that HCBS programs provide the benefits of community living and the opportunity to receive services in the most appropriate integrated setting. States that had HCBS programs before March 17, 2014 were required to file statewide transition plans to bring them into federal compliance by March 17, 2022, or risk losing federal Medicaid funding for them. Federal money amounts to half the revenue to support these programs.
There are nine programs for which Illinois provides Home Based Community Services under what is called a 1915(c) waiver. They include:
• Adults with developmental disabilities
• Support for children and young adults with developmental disabilities
• Residential programs for children and young adults with developmental disabilities
• Medically fragile/technology-dependent children
• People who are elderly
• People with brain injuries
• People with disabilities
• People with HIV/AIDS
• Supportive living programs
Since 2017, the transition plan has been in formation via public hearings, surveys and site visits under the domain of the Illinois Department of Human Services, Division of Developmental Disabillities and the Department of Aging. In addition, medically fragile, technology-dependent children are under the Division of Special Care for Children at the University of Illinois at Chicago, brain injuries under the IDHS Division of Rehabilitation, and supportive living programs under the Department of Healthcare and Family Services.
The Illinois Transition Assessment Tool has 10 categories to determine whether people receiving Medicaid services in the community have the same opportunities to work, to engage in community life and to control personal resources as those not on Medicaid. The questionnaire goes into minute detail, such as whether the person has a lockable door, whether they know how to access public transportation, whether they can furnish their room any way they wish, whether they can dress and cut their hair in their own fashion and whether they can keep food in their rooms in order to eat when they want. It’s all necessary to define “least restrictive environment.” For example, many CILA residents live in eight-person homes with two persons each in four bedrooms, Baker said. If the federal requirements call for more privacy and a lockable door, “does that mean you need to open a second home so they can each have their own bedroom? We don’t know how much it would cost. The money we’ve been trying to get into the state budget doesn’t allow for change.”
