Lack of Funding at Root of Personal Care Home Failures
by Talley Wells
Director, Disability Integration Project
One of Georgia's most pressing yet least visible problems is that we have thousands of people with disabilities living in often appalling conditions in substandard personal care homes.
It is critical to emphasize, though, that poorly run personal care homes are the symptoms of the underlying problem rather than the cause. The root of the problem is inadequate community funding for Georgians with disabilities to live in community settings.
Georgia ranks 42nd in the nation in providing supports for community living for older adults and people with physical disabilities, according to the AARP long-term services and supports scorecard (http://www.longtermscorecard.org/).
Over six thousand Georgians with intellectual disabilities are on a waiting list for community Medicaid funding. With this lack of funding, problems will persist in personal care homes no matter how many regulations are created and enforced.
In the last few years, Georgia has taken significant steps through a through implementation of a mental health settlement with the U.S. Justice Department for people to return to the community from nursing homes. Unfortunately, we still have an enormous distance to go.
Additionally, the state made the personal care home crisis worse by terminating hundreds of people with mental illness and developmental disabilities from a Medicaid program called SOURCE, which left these individuals with no way to pay for their residential supports.
Many people with significant disabilities who lost their SOURCE funding or who have never received community supports must rely solely on a disability check of under $700 a month . This limited amount of money must be used for rent, food, and to pay for disability supports. It is easy to understand why often only substandard care is available to severely disabled people when that is all they can pay for room and board.
For a person with a cognitive disability, a personal care home operator routinely becomes the disability check recipient. This causes additional problems. It means that the individual has no personal access to his or her resources, which can trap him in the personal care home. The individual must rely on the personal care home operator for food, an allowance and transportation. Getting away from the personal care home can be next to impossible. There is no money to find another place, and even if another place is found, the personal care home operator may make it difficult to access the disability check.
For men and women with physical disabilities, the choices of places to live on a disability check become even more limited due to the lack of accessibility of many homes. If you look around any Georgia neighborhood, you will see that only a very few homes that are accessible.
Finally, few people with disabilities want to live in personal care homes, even if the home is well run. Most people with disabilities, just like people of all abilities, want to live in their own homes or in family-like settings. Thus, our goal should not be creating well-run and regulated personal care homes, but to create a community where people of all abilities can find meaningful work and have sufficient funds to live in a safe accessible home in the community of his or her choosing.
To this end, the Disability Integration Project has advocated for additional housing vouchers for people with disabilities in the state's Olmstead Plan. Stable housing is also a central part of much of our individual client advocacy. We were very pleased that the state of Georgia and the Justice Department followed our suggestion to include 2000 state funded housing vouchers in their 2010 Olmstead Settlement Agreement. While this was an important step, the personal care home problem demonstrates how far we still have to go.
What is the Disability Integration Project?
The Disability Integration Project started with the advocacy of Sue Jamieson in the 1980s who went into psychiatric hospitals, nursing homes, and other institutions to advocate for individuals with disabilities confined in these institutions. In 1999, Ms. Jamieson and the Atlanta Legal Aid Society won theOlmstead v. LC case in the United States Supreme Court.
The Court held that individuals with disabilities have a right to receive services in the most integrated setting. Due in part to this victory, the Disability Integration Project has grown to four attorney and two paralegals who advocate for individuals with disabilities to receive the supports they need to live meaningful lives in the community. We have been leading advocates in: a landmark settlement between the Justice Department and Georgia, Georgia's Money Follows the Person program, the development of a state Olmstead Plan, and fighting any backsliding on Medicaid waivers for people with disabilities.