Quadriplegic Man Tries to Finish School from Nursing Home

34 year old Paul Boyd lives at a nursing home , 12 miles away from the college he plans to start attending on August 30, while litigation is pending.

The problem is state Medicaid will not pay for him to live independently, Boyd said. Medicaid currently pays for his housing in the Chandler Health and Rehabilitation Center, where he receives around-the-clock care.

Less costly care of 10 hours a day would allow Paul to live in the community, from which he is now apart. Paul's attorneys say his case fits squarely within Olmstead, which ruled against unnecessary institutionalization of disabled people.

Boyd plans to study community counseling, but fears that the logistics of his current location will mean his plans will go on hold pending the outcome of the lawsuit.

We're still at a point where programs pay more money to institutionalize people with disabilities rather than support them living - and being productive- in the community. This is bad for everyone- including taxpayers.

The effect of cutbacks: Terri's testimony before NY Senate Finance Committee

Terri has posted about her testimony Monday in front of the NY Senate Finance Committee. Here's her statement:

Thank you for the opportunity to speak to you this afternoon about our state budget.

As a the mom of a child with Down syndrome, and as a member of the board of the Flower City Down Syndrome Network in Rochester, I am upset both by Governor Paterson's Deficit Reduction Proposal and by the Republican counter-proposal to make severe cuts to Medicaid services. These cuts unfairly victimize people with disabilities.


As a homeowner I know that neglecting a leak in my roof will lead to damage to my ceilings, then to my furniture, then to my rugs, then to my other belongings, eventually damaging the house’s very foundation, and I might even lose my house. Because of this cascade of ever-worsening problems, fixing even a small leak in my roof becomes my priority. Even when my budget is tight.

I submit that the people of NY—people like my daughter--respond to neglect much the way my house does to a hole in its roof. I believe that the proposed cuts to the OMRDD and Medicaid, and the cascade of damage that will follow for New York, and for New Yorkers and for my little girl, should not be allowed to happen.

The OMRDD provides funding for services for people with Developmental Disabilities including those with Down syndrome. This funding brings in Federal matching money which I know our state can't afford to lose. .

Agencies which rely on both OMRDD funding and Federal matching funds may well find that grants they receive from other sources are jeopardized by these cuts as well. Some of these agencies may be forced to close their doors, most will have to cut services and staff. Where does that leave our kids?

Increased unemployment--both of caregivers and of people with Down syndrome and other disabilities--is another problem our state simply cannot afford.

Unmet care needs and fewer caregivers will lead to deteriorating health and increased burdens on the state’s life-care and healthcare systems. We can’t afford this either.

People with Down syndrome and other Developmental Disabilities really have no private options for meeting their needs. They contend with a dismal unemployment rate. And the pre-existing condition of their disability necessitates Medicaid eligibility. Consequently, very few have more than $2000 to their names, making it virtually impossible for them to afford anything else.

These proposed cuts unfairly and unnecessarily victimize people who already live in poverty. This is wrong for my daughter—it’s wrong for anyone’s child.

As our legislators you must find ways to re-structure necessary budget-cutting without laying the burden on people who have Developmental Disabilities like Down syndrome--who have nowhere else to turn.

Thank you.

Health Care Reform and the Disability Community, an article by Ari Ne'eman

This article deals with many issues involved in health care reform as it affects those with disabilities and is a "must read" for all of us. Here's just an excerpt:

Right now, the main obstacle to LTSS reform is the bias in Medicaid long term care policy which reimburses states for costly and segregated institutional care but makes it extraordinary difficult to use the same money to support adults in the community instead. A person who uses a wheelchair or an adult with a developmental disability such as autism or Down Syndrome can get the government to pay for a costly institutional placement with low quality of life, but often must spend years on a waiting list for far less expensive services, such as attendant care that could keep them in their home or their family's. The abuses that take place within nursing homes and institutions are well documented and are truly shocking. This situation benefits nobody but lobbyists for the nursing home/institutions industry, which has been quite active in opposing reform on this issue.

The Senate Finance Committee has recognized the need for some action on LTSS, but so far has only recommended limited reforms like increasing the federal Medicaid reimbursement for Home and Community Based Services by 1%. The real answer can be found in the Community Choice Act, which would add a benefit to Medicaid that would require states to allow people who meet an institutional level of care to instead control their own supports while choosing to live at home or with their families. President Obama won kudos from the disability community by supporting the Community Choice Act during his campaign, but since then the White House has signaled that this issue will not be considered as part of health care reform. The Community Choice Act should be properly considered a civil rights issue, as it means the difference between segregation or integration for millions of disabled citizens as well as many senior citizens for whom LTSS reform may be what keeps them out of a nursing home and living a life of dignity. Health care reform that fails to include this issue is health care reform that fails to meet the needs of over 50 million Americans with disabilities.

You can read the rest here.

Senate discussing changes in Medicaid Home and Community Care waiver

Disability Scoop reports that the Senate is considering changes for using the Medicaid Home and Community based care waiver as part of the health care reform changes. Changes will be discussed at a meeting tomorrow, which include, in part: ending waiting lists, requirement of meeting institutional level of care, giving states more leeway with income requirements, and increasing the federal match by 1 per cent. You can see the entire list at the link above.

Medicaid change would encourage putting spouse into nursing home

According to this New York Times article. a change in Medicaid law by outgoing President Bush has been delayed until March by Governor Paterson, in hope that President Obama will overrule it.

For 20 years, federal law has protected married couples from having to choose between divorcing or becoming impoverished when one spouse needs expensive nursing home care, allowing the healthier spouse to retain assets and income while the sicker one’s care is covered by Medicaid.

New York has extended this same rule to couples where one requires at home care.

Now, the federal government has ruled that New York has been too generous in applying the income protections to people at home, forcing several thousand couples to make a stark choice by March.

Advocates say the number of couples affected is close to 4,000.

The advocates say that the federal interpretation makes little sense.

“The root of their interpretation is that Congress wanted to give states the option of extending these protections, but only to those whose incomes are so low that they would have no income to share with their spouse,” Ms. Bogart said. “It would be so absurd that no one would ever qualify.