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2009 priorities for people with disabilities
Written by Jonathan Jaffe   
Tuesday, 06 January 2009 15:39

With President-elect Barack Obama moving into the White House and the 111th Congress being sworn in, national advocacy groups and lobbyists are writing their priority lists for millions of Americans with developmental disabilities, focusing on independent living and the need for additional services.

The prospect of a new administration is cause for renewed optimism among many advocacy groups. "The disabilities community is very hopeful. A new presidency means new opportunities for improvement and change," said Andy Imparato, president and CEO of the American Association of People with Disabilities (AAPD).

Imparato thinks big about potential reforms. The ultimate change he said would be an overhaul "the four primary ways" government delivers money and services to people with developmental disabilities.

A father and daughter walk along the boardwalk in Ocean City in August.

"Social Security Disability Insurance, Social Security Supplemental Income, Medicaid and Medicare were all designed at a time when the two signs of being disabled were that you were poor and couldn’t work.” Imparato said. “And each still has these arcane rules."

"Times have changed. So the big Cohuna would be to reform the arcane rules so entitlements are consistent with the goals of the Americans with Disabilities Act," Imparato said. "People with disabilities should not have to live in poverty and should be able to work without losing benefits."

While each advocacy group, organization and association for people with developmental disabilities has its own "wish-list" of federal legislation, most have united behind a set of proposals to improve the way people with developmental disabilities live and receive services.

The focus is to help more people with developmental disabilities move from nursing homes and institutions into community-based settings, to live as independently as possible, and to help them receive the long-term care and support they need to do so. Beyond that, insurance reform and education initiatives for people with developmental disabilities are among their primary concerns.

Chief among the 2009 priorities is to have Congress adopt and the new President sign the Community Choice Act.

The Community Choice Act would amend Title XIX of the Social Security Act to give those eligible under Medicaid for nursing home services or other institutional care a choice of equal access to community-based services and supports and to restructure the funding for those choices.

"Getting Community Choice passed goes to the core of our independent living philosophy," said Justin Chappell, spokesman for the Washington D.C.-based National Council on Independent Living (NCIL), one of the oldest, largest cross-disability grassroots advocacy groups for people with disabilities. "And it’s a law that makes financial sense."

According to NCIL statistics, the average cost of a private nursing home room in the U.S. is $75,000, yet the cost of a full-time home health aide to assist a person with developmental disabilities averages $39,500 per year.

"So, the savings to states and the federal government by simply allowing people to receive services in their homes would allow for expanded healthcare services," Chappell said. "And it would eliminate lengthy waiting lists of people seeking services anywhere but in an institution. It’s definitely our top priority."

Val Bradley, president of the Massachusetts-based Human Services Research Institute, a consulting group that works with state agencies and advocacy groups for people with disabilities, said that whatever can be done in Washington D.C. to give people with developmental disabilities more choice and more voice in how federal resources are distributed on their behalf would “be a big step forward” for people with disabilities.

"The real prize," said Bradley, "would be to knitting together Community Choice, real choice system change grants, money-follows-the-person grants . . . knitting together all these things into a permanent, cohesive set of options for people with disabilities."

Self-advocates feel the same way. "Of course, we want Community Choice passed," said Arkansas-based self-advocate Julie Petty, a long-time proponent of independent living. "Most people with disabilities don’t belong in nursing homes or institutions and they don’t want to be there."

"If they had a real choice, they would chose not to be there," said Petty, past-president of the Self-Advocates Becoming Empowered (SABE) group. "No matter what our disability, our quality of life is better in our own home or at home with our families."

Charles "Chaz" Mosley, executive director of the National Association of State Directors of Developmental Disability Services, said states are now wrestling with a wide range of issues. Among the top priorities for a new administration, he said, has to be an expansion of real-choice system grants and money-follows-the-person grants.

"Through these programs, people who need long-term care and prefer to live in their own homes or in their communities would have a chance do so," said Mosley. "States get more for their money by offering people with disabilities more control over how and where they receive Medicaid-funded, long-term care."

Keep Washington Focused

Texas attorney Jeff Sell, the Autism Society of America’s new vice president of public policy, said action on these initiatives is long overdue, and keeping Congress and a new president focused on disabilities issues should be a primary goal for advocacy groups.

"Staffers on the Hill have already put in an enormous amount of time, blood, sweat and tears to get things like the Community Choice Act or IDEA through the committee process," Sell said.

"There’s wide bipartisan support for the Community Choice Act,” he said. “Both sides of the aisle agree it’s a whole lot cheaper to provide trained support and services to people with disabilities in their own home rather than in brick-and-mortar institutions. Then, somehow, poof! . . this legislation never made it onto the floor for a vote. It’s frustrating.

"Most of our politicians have very noble intentions," he added. "Our congressmen and senators seem to agree that things like the Community Choice Act or IDEA are the right way to go. But, sometimes Congress gets a little goofy.

"They vote in favor of authorizing legislation. Then, they never get around to (voting for) the appropriation bill to pay for it. That’s what happened to IDEA," Sell said. "They get distracted. A war flares up. The economy tanks. Then, a new election cycle is upon us.

"We end up seeing all these campaign commercials saying they supported autism legislation or this or that legislation. What they don’t say is they never got around to paying for it. That’s what we now need them to do. We need to keep them focused," Sell said.

The "CLASS Act"

Another key piece of federal legislation is the Community Living Assistance Services and Supports Act, or CLASS Act.
The legislation would create a new national insurance program financed by voluntary payroll deductions to provide cash benefits for adults who become severely disabled. The benefits would help pay for services and supports like housing modification, assistive technologies, personal assistance services and transportation.

"Again, the CLASS Act is a priority. It’s at the heart of our core values," said Chappell of the National Council for Independent Living. "People with disabilities can creatively use the flexible cash benefit to purchase services, supports and technology. Beneficiaries would be able to choose how to best meet their own needs."

"The CLASS Act represents a new approach to expanding access to services for people with disabilities without further burdening Medicaid because it uses a new funding stream," Imparato said. "Too many people are forced to live in poverty just so they can qualify for Medicaid to get the care they need. The beauty of the CLASS Act is that it does not rely on Medicaid."

"That’s why it’s absolutely brilliant. It’s financed through voluntary payroll deductions of $30 per month with opt-out enrollment," said Liz Savage, director of the Health and Housing Policy Disability Collaboration, the public policy and lobbying arm of ARC of the United States and United Cerebral Palsy.

"We view it as important public policy step to help people overcome barriers to independence they may confront due to physical and cognitive impairments," Savage said.

More IDEA Money

Advocacy groups for people with developmental disabilities and their lobbyists say raising federal appropriations for the Individuals with Disabilities Education Act (IDEA) is another important initiative they hope a new President and Congress acts upon.

IDEA is a 1975 federal civil rights law designed to ensure that students with disabilities receive a "free, appropriate public education" in the least restrictive setting and receive supports tailored to their specific needs. When IDEA was first enacted, Congress made a commitment to pay up to 40 percent of the average per-student cost for every special education student, but advocacy groups and education lobbyists point out that commitment has never been met.

"Congress is currently funding IDEA at less than 18 percent and school districts must come up with the rest," said Marilyn Golden, policy analyst for the California-based Disability Rights Education and Defense Fund (DREDF).

For fiscal year 2008, the authorized funding level for IDEA was $19.23 billion, but Congress only appropriated $10.7 billion. Although that amount was $200 million above 2006 levels, the federal share dropped from 17.6 percent to 17.2 percent.

Most advocacy groups are lined up behind the Maryland-based American Speech-Language-Hearing Association, which asked Congress for a $2 billion increase in fiscal year 2009 appropriations for IDEA. If approved, that would bring the federal share of IDEA funding up to 20 percent, the highest level of federal funding support for students with disabilities.

Part of the reason Congress never fully-funded IDEA is because "it competes with federal funding for smaller classes, enrichment programs like art, music, building improvements, after-school tutoring, etc.," said Julia Epstein, director of development for DREDF.

"IDEA funding gets decided annually,” Epstein said. “To fully fund IDEA in an ongoing way would make it a funding mandate and Congress would lose control.”

Safeguarding the level of Medicaid funding in light of rocky economic times is also on the table.

"Medicaid is financed jointly by the federal and state governments through tax revenue. In our current economic downturn, if states can’t find other revenue sources, they could resort to cutting benefits, terminating enrollment or reducing provider reimbursement. None of which are good options," explained Savage, the director of the Health and Housing Policy Disability Collaboration.

Advocates are also lining up behind a bill to temporarily increase the federal medical assistance percentage (FMAP) to Medicaid. Rep. Frank Pallone (D-N.J.) introduced a bill earlier this year to raise the federal share. "But, the measure came too late to be included in the federal stimulus package. It will be back on the table again next year. It’s critical to maintain Medicaid services," said Savage.

Golden, the policy analyst with DREDF, agreed, but also said "certain insurance reforms are desperately needed," referring to a pending bill called the Medicare Durable Medical Equipment Access Act.

"We would like improved Medicaid coverage for durable medical equipment like wheelchairs and walkers, and for prosthetics and orthotics. There’s some coverage now, but it’s not enough," said Golden.

Also on the "wish lists" for advocacy groups, particularly those representing people with autism, are separate bills that two New Jersey lawmakers have proposed.

First, is the Helping HANDS for Autism Act of 2008 that Sen. Robert Menendez (D-NJ) introduced last spring to help guide families seeking services and care through the Internet.

The Helping HANDS bill would also pay to train first-responders, including police, fire departments, emergency medical technicians, to recognize and help people with autism and other cognitive behavioral disabilities.

Menendez’s legislation would also, under the federal Department of Housing and Urban Development, create a task force of autism advocacy groups, community-based organizations and parents to develop a housing demonstration grant program for adults with autism and other cognitive disabilities.

Though she declined to comment on Menendez’s specific proposal, Golden agreed that "there is far too little affordable housing available for people with disabilities."

"We would want any HUD initiative to steer clear of segregated subsidized housing," Golden cautioned. "People with disabilities are uneasy with the notion of public housing specifically for people with disabilities. The goal should be to provide more subsidized affordable housing that integrates them into a community, not segregates them from it."

Second is the Teacher Education for Autistic Children Act of 2007, or TEACH Act, that Rep. Chris Smith (R-NJ) proposed to amend the Internal Revenue Code. The bill would provide refundable tax credits for education related to autism spectrum disorders. The purpose of the legislation is to increase the number of teachers with this expertise.

"Helping HANDS and the TEACH Act are absolutely huge for us," said Sell, of the Autism Society of America. "The TEACH Act would offer real incentives, including loan forgiveness, scholarships and tax breaks for young people on the road to becoming teachers, who focus on autism education.

"And Senator Menendez’s bill is a navigator," he added. "The number of available services out there for people with autism or with any developmental or intellectual disability is broad and confusing. This would help simplify it and go a long way toward providing affordable housing for people with autism spectrum disorders."
Among the other federal legislative priorities cited by various advocacy groups include:

• Expand the federal Real Choice Systems Change (RCSC) Grants for Community Living. Since fiscal year 2001, the Centers for Medicare & Medicaid Services (CMS) awarded about $270.3 million in Real Choice grants to enable states and non-profit agencies to help people with disabilities receive long-term medical care and supports in homes and community-settings rather than in institutions and nursing homes.

• Increase funds to the Money-Follows-the-Person (MFP) Rebalancing Demonstration, enacted under the Deficit Reduction Act of 2005. The program helps states reduce their reliance on institutional care while developing community-based, long-term care opportunities, enabling the elderly and people with disabilities to fully participate in their communities.

• Re-authorize and reform the State Children's Health Insurance Program (SCHIP), enacted in 1997 to insure low-income children who are ineligible for Medicaid but whose families cannot afford private insurance. Advocacy groups want to increase coverage to more children and eliminate limits on mental health care for children that many states have imposed, including caps on inpatient and outpatient care, annual cost-restrictions and limits on diagnostic services. President George W. Bush vetoed two earlier versions of the SCHIP bill saying they represented the first step toward "government-run health care for every American."

• Amend the Developmental Disabilities Assistance and Bill of Rights Act (DD Act) to fund self-advocates in addition to the money the act already provides for state developmental disability councils; University Centers for Excellence in developmental disabilities education and research; and for agencies that provide protection and advocacy services.

• Enact the 21st Century Communications and Video Accessibility Act of 2008, a comprehensive disabilities bill to amend the Communications Act to ensure that new Internet-enabled telephone and television services are accessible to and usable by people with disabilities.


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