USA Today
Blane Beckwith wants to keep living at home with his mother and younger brother in Berkeley, Calif.
For that to happen, Beckwith, 54, who has spinal muscular atrophy and uses a wheelchair, relies on an aide paid by the state to get him in and out of bed, bathe him, feed him, dress him and do everything he can't do for himself.
Now that kind of help is in jeopardy. California, facing a $19.1 billion budget gap, is considering a reduction in funding that pays for home care aides for the disabled. It already cut funds last year.
Beckwith worries that under the new, tighter rules, he might no longer qualify for his aide and other assistance and that he'll end up in a nursing home.
"I'd rather be dead," he says. "Twenty years after the Americans With Disabilities Act was signed, things are getting worse for us. States want to save money by cutting services to the most vulnerable people. That's us, the disabled."
Last month, the nation celebrated the 20th anniversary of the Americans With Disabilities Act (ADA), a law that for 50 million disabled people is the equivalent of Brown vs. the Board of Education, the landmark Supreme Court ruling that ended racial segregation in schools and paved the way for the civil rights movement.
The ADA prohibits discrimination against people with disabilities in employment, public accommodations, transportation and state and local services.
Now, though, gains made under the ADA are running into recession-battered state budgets. At least 17 states have cut into funding for assistance to the disabled since 2009 or are planning to do it this year, says Phil Oliff, a policy analyst with the Center on Budget and Policy Priorities, which analyzes the effect of public spending on low-income people. The cuts include cash, home nursing services and grants to agencies that help the disabled live independently.
Under the ADA and a 1999 Supreme Court decision upholding it, the disabled have a right to live in their communities. States, within their resources, must provide community-based services that make it possible.
That means states are up against opposing mandates: Under the ADA, the court said, states must provide care that best integrates a person into the community — as long as the states can pay for it. However, Medicaid rules require them to pay for nursing home care, but not home care, for people with disabilities.
"I think every state wants to provide more community-based care, but they just can't afford it," says Ann Kohler, executive director of the National Association of State Medicaid Directors, which manages services to the disabled. In Michigan, clients are at risk of losing physical therapy in Detroit.
About 3 million Americans who need long-term care live at home and get state-paid services, according to the Kaiser Commission on Medicaid and the Uninsured.
"States are in terrible fiscal constraints right now," Kohler says. "The one thing they can cut are optional services and rates (that states pay for optional and mandatory services), and they are doing both. Home-based care is optional. Personal care is optional. Those things are going down."
The Obama administration argues that, budget constraints or not, states have to provide home services. The Justice Department has filed lawsuits and, in other cases, supporting briefs in 11 states.
Not being able to afford the community-based services is not an excuse, says Thomas Perez, assistant attorney general for civil rights. He says his department has been working with the Department of Health and Human Services to find more funding for some of the states it is going up against in court.
"People with disabilities want to be free and independent and robust participants in the community," Perez says. "It's hard if not impossible to accomplish that if you are warehoused in an institution."
Rahnee Patrick of Chicago knows about independent living. Patrick, 36, has psoriasis and arthritis so severe that she cannot use her arms and hands. She and her husband, Mike Irvin, 53, who uses a wheelchair because of multiple sclerosis, live in their own home but need aides.
Now, Illinois plans to reduce services to the disabled as part of $1.4 billion in budget cuts. She doesn't know what the impact of the reduction will be on her or her husband, but she says that without the services, she'd still be living with her parents and would not have married her husband of four years.
"I get to live the life I never dreamed for myself," she says. "These cuts would take that away."
For that to happen, Beckwith, 54, who has spinal muscular atrophy and uses a wheelchair, relies on an aide paid by the state to get him in and out of bed, bathe him, feed him, dress him and do everything he can't do for himself.
Now that kind of help is in jeopardy. California, facing a $19.1 billion budget gap, is considering a reduction in funding that pays for home care aides for the disabled. It already cut funds last year.
Beckwith worries that under the new, tighter rules, he might no longer qualify for his aide and other assistance and that he'll end up in a nursing home.
"I'd rather be dead," he says. "Twenty years after the Americans With Disabilities Act was signed, things are getting worse for us. States want to save money by cutting services to the most vulnerable people. That's us, the disabled."
Last month, the nation celebrated the 20th anniversary of the Americans With Disabilities Act (ADA), a law that for 50 million disabled people is the equivalent of Brown vs. the Board of Education, the landmark Supreme Court ruling that ended racial segregation in schools and paved the way for the civil rights movement.
The ADA prohibits discrimination against people with disabilities in employment, public accommodations, transportation and state and local services.
Now, though, gains made under the ADA are running into recession-battered state budgets. At least 17 states have cut into funding for assistance to the disabled since 2009 or are planning to do it this year, says Phil Oliff, a policy analyst with the Center on Budget and Policy Priorities, which analyzes the effect of public spending on low-income people. The cuts include cash, home nursing services and grants to agencies that help the disabled live independently.
Under the ADA and a 1999 Supreme Court decision upholding it, the disabled have a right to live in their communities. States, within their resources, must provide community-based services that make it possible.
That means states are up against opposing mandates: Under the ADA, the court said, states must provide care that best integrates a person into the community — as long as the states can pay for it. However, Medicaid rules require them to pay for nursing home care, but not home care, for people with disabilities.
"I think every state wants to provide more community-based care, but they just can't afford it," says Ann Kohler, executive director of the National Association of State Medicaid Directors, which manages services to the disabled. In Michigan, clients are at risk of losing physical therapy in Detroit.
About 3 million Americans who need long-term care live at home and get state-paid services, according to the Kaiser Commission on Medicaid and the Uninsured.
"States are in terrible fiscal constraints right now," Kohler says. "The one thing they can cut are optional services and rates (that states pay for optional and mandatory services), and they are doing both. Home-based care is optional. Personal care is optional. Those things are going down."
The Obama administration argues that, budget constraints or not, states have to provide home services. The Justice Department has filed lawsuits and, in other cases, supporting briefs in 11 states.
Not being able to afford the community-based services is not an excuse, says Thomas Perez, assistant attorney general for civil rights. He says his department has been working with the Department of Health and Human Services to find more funding for some of the states it is going up against in court.
"People with disabilities want to be free and independent and robust participants in the community," Perez says. "It's hard if not impossible to accomplish that if you are warehoused in an institution."
Rahnee Patrick of Chicago knows about independent living. Patrick, 36, has psoriasis and arthritis so severe that she cannot use her arms and hands. She and her husband, Mike Irvin, 53, who uses a wheelchair because of multiple sclerosis, live in their own home but need aides.
Now, Illinois plans to reduce services to the disabled as part of $1.4 billion in budget cuts. She doesn't know what the impact of the reduction will be on her or her husband, but she says that without the services, she'd still be living with her parents and would not have married her husband of four years.
"I get to live the life I never dreamed for myself," she says. "These cuts would take that away."
