Correction: In Issue 16 of the Weekly Advocacy Monitor, we incorrectly identified Brenda Curtiss as the new Chair of the NCIL Regional Representatives Committee. Carla Lawson of Oklahoma (Region VI) is the new Chair of that Committee.
1) What’s Happening in the Nation’s Capital?
2009 Supplemental Appropriations Bill: Stimulus Funds Do Not Need to be Used to Create New Centers!
NCIL Officially Supports the Confirmation of Judge Sonia Sotomayor to the Supreme Court
Five Things You Should Know About Judge Sonia Sotomayor and Disability Rights
2) National News
Congress is Home for the Week – Have They Heard from You?
CLASS Act Scored: Cost-Savings of $59 Billion Over 10 Years!
No State Meets Community Living Obligation, Bazelon Report Says
Report Supports Use of Nonpesticide Measures
Current Voting Issues, Part II
3) State News
Oregon Couple Seeks $14 Million for “Wrongful” Birth of Daughter with Down Syndrome
Mental Health Parity in Michigan Needs Your Support: Action Alert from Partners for Parity
Illinois Advocates Hold Huge Protest over Human Service and Mental Health Cuts
4) Announcements and Additional Resources
Kathy Martinez Confirmed as ODEP Assistant Secretary
2009 Supplemental Appropriations Bill: Stimulus Funds Do Not Need to be Used to Create New Centers!
The Rehabilitation Act sets out priorities for Title VII, Part C funding as follows:
- Fund current Centers at the current level
- Provide a Cost of Living Increase to current CILs
- Start New CILs
Section 803 (See language below) of the Fiscal Year 2009 Supplemental Appropriations Bill, passed by both houses of congress and signed by the President removes the requirement for RSA or Designated State Units to start new Centers for Independent Living with American Recovery and Reinvestment Act (ARRA) funding. This would leave it to the State Plan for Independent Living (SPIL) to determine if new CIL’s should be developed. NCIL discourages states from starting new CILs with ARRA funding unless they have developed a strategy to continue funding the new CILs after the ARRA funds have been expended.
SEC. 803. The Commissioner of the Rehabilitation Services Administration, or the Director of a designated State unit that has approval to make awards under section 723 of the Rehabilitation Act, may allocate funds appropriated under the American Reinvestment and Recovery Act of 2009 (Public Law 111-5) (“ARRA”) for the Centers for Independent Living Program among centers in a State without regard to the priority in section 722(e)(3) or section 723(e)(3) of the Rehabilitation Act of 1973 for funding new centers if the allocation is consistent with the provisions of the State plan submitted under section 704 of the Rehabilitation Act and approved by the Commissioner. Such funds and other Independent Living funds available under ARRA that are being set aside by the Department of Education for competitive grants may be used to support multi-year grants of up to 5 years and may be expended by any recipients of such multi-year grants during the project period of the grant, notwithstanding any provision in the Rehabilitation Act limiting the period of availability for obligation or expenditure by the grantee.
NCIL Officially Supports the Confirmation of Judge Sonia Sotomayor to the Supreme Court
NCIL has gone on record to support Sonia Sotomayor to be confirmed as the next Supreme Court Justice of the United States. NCIL has weighed her record as an appeals court and circuit court judge, which was an extensive record, and how we felt that record demonstrated her ability to make decisions on the Supreme Court that would respect the rights of people with disabilities. NCIL’s decision was supported by the broad research efforts of the Bazelon Center for Mental Health Law, and their interpretation and review of the thousands of cases that Judge Sotomayor has made a decision on. Judge Sotomayor’s decisions under the Americans with Disabilities Act (ADA), have demonstrated a good understanding of – and healthy respect for – the rights of persons with disabilities. In important ADA cases concerning the definition of “disability”, Judge Sotomayor has often combed through voluminous or technical testimony to determine whether the plaintiff was protected by the law. Similarly, her understanding of the importance of accommodations to help workers with disabilities maintain employment is reflected in her thoughtful decisions in workplace accommodation cases. She has not been afraid to dissent from a decision finding that plaintiffs did not have disabilities. Nor has she been afraid to overturn a jury verdict where incorrect instructions to the jury impeded a plaintiff’s ability to obtain relief under the ADA.
Additionally, NCIL feels it is important to embrace the fact that Judge Sotomayor is a person with a disability, and unlike others before her, has embraced and not hidden her disability from the public. Read a letter in support of her confirmation and sign on.
Five Things You Should Know About Judge Sonia Sotomayor and Disability Rights
Source: Bazelon Center for Mental Health Law:
Judge Sonia Sotomayor, President Obama’s first nominee to the United States Supreme Court, understands that disability rights are civil rights. As a judge on both the district court and circuit court, she has demonstrated that she recognizes the importance of Congress’s role in enacting major disability rights laws including the Americans with Disabilities Act (ADA), the Rehabilitation Act, and the Individuals with Disabilities Education Act (IDEA). These laws protect the civil rights of people with disabilities by requiring that they have equal opportunities in work and at school, that they have equal access to government services and public accommodations, like stores, restaurants, theaters, and sporting events. The care that Judge Sotomayor has taken in her decisions under these laws indicates a respect for Congress’s intent to protect individuals with disabilities from such discrimination. And she is not afraid to take bold positions to ensure that Congress’s laws protecting disability rights are upheld.
Judge Sotomayor understands that the ADA protects millions of people with disabilities: Over the years many judges have taken an extremely narrow view of whether people with disabilities like cancer, diabetes, epilepsy, and many mental illnesses were covered by the ADA. Last year, Congress had to amend the ADA to make it clear that people with disabilities like these are protected. Judge Sotomayor has a record of looking at all of the facts to ensure that she makes the right decision about whether a plaintiff is protected by the ADA.
Judge Sotomayor knows how important special education is to students with disabilities and their families: Special education consists of critical specialized instruction and services for students with disabilities who need these supports to succeed in school and life. Judge Sotomayor has acknowledged that when families and schools disagree about what services are appropriate, a student’s success in school hangs in the balance and, as a result, such disagreements should be resolved as soon as possible. In one case, Judge Sotomayor held that parents can place their child in an alternative setting and get reimbursed for the cost of appropriate services if the public school fails to provide them. This year the Supreme Court agreed with Judge Sotomayor’s position when it decided the Forest Grove case.
Judge Sotomayor knows that people with disabilities have a right to privacy: Under the ADA employees are protected from having personal information disclosed to people who don’t need to know about it. Judge Sotomayor has affirmed this, stating that employers should not be able to “monitor … [or] control … the health of their employees [or] the most intimate aspects of their off-duty lives."
Judge Sotomayor knows that people with disabilities are entitled to lead independent lives, just like everyone else: Sometimes people make assumptions about persons with disabilities based on stereotypes of helplessness. Judge Sotomayor understands that this is wrong. Arguing that it was wrong to appoint a guardian ad litem (a person appointed by the court to protect the interests of someone who is incapacitated) for a plaintiff who had been released from a psychiatric hospital, she determined, at the least, that the plaintiff should have been given adequate notice that, “if … a guardian ad litem was appointed, she would lose all authority to make decisions concerning her own case.”
Judge Sotomayor understands that court rulings have consequences: Judge Sotomayor understands that her decisions in disability rights cases have consequences for people with disabilities. In a case about whether a person with a learning disability should get accommodations to take the bar exam so she could earn her right to practice law, Judge Sotomayor wrote that the plaintiff “struggled through three laborious years of law school—at no small fiscal or psychic cost. To tell her now that she is free to go and practice another profession, or to return to her prior field … would not be consistent with the remedial goals that Congress intended in passing the ADA.”
In addition to her extensive legal expertise, Judge Sotomayor’s life experience makes her uniquely qualified to be a disability rights champion on the Supreme Court. Unlike any other Supreme Court justice within recent memory, Judge Sotomayor has publicly acknowledged that she has a disability--insulin-dependent diabetes. Her life experience with diabetes makes her uniquely qualified to help her colleagues on the Supreme Court understand the importance of the protections in the ADA and other disability rights laws to people with disabilities.
We need a disability rights champion on the Supreme Court. For all of these reasons, we think Judge Sotomayor can be a champion for disability rights. If you agree, contact your Senators now to ask that he or she vote to confirm Judge Sotomayor for the Supreme Court. To find contact information for your Senators, go to www.senate.gov.
Congress is Home for the Week – Have They Heard from You?
The 4th of July Recess is a week-long period where members of Congress are back in their districts for town-hall events, parades, and a chance to hear from constituents. NCIL has repeatedly urged all members to find out if your Representative or Senators will be in your area, and if so, get out and talk to them about getting the Community Choice Act, CLASS Act, Promoting Wellness for People with Disabilities Act, and language to end the two-year wait for Medicare into the healthcare reform legislation. Many members of Congress have publically stated that what they hear from constituents during their week home is what they will take back with them when considering healthcare reform legislation. Let’s not let this opportunity slip away. If there are no plans for your members of Congress to be in your area, call the nearest local office they have and share the message. The bills are being worked on right now, and we do not have any guarantees that any of the language we want in the bills will be there in the end – so ACT NOW!
CLASS Act Scored: Cost-Savings of $59 Billion Over 10 Years!
Last week, the Congressional Budget Office (CBO) finally released their score (cost estimate) of the CLASS Act. The news was very good for advocates who have been fighting the cost issue on a number of fronts. The CBO scored the bill for a cost-savings of $59 billion over the next ten years, and even more importantly, the CBO indicated the program will remain solvent over time. NCIL is pleased to hear this and feels that the CLASS Act is an important piece of the Long-Term Care puzzle, in addition to the Community Choice Act. When you talk to your members of Congress about the CLASS Act while they are in their districts this week, tell them that the CBO has scored the CLASS Act. It SAVES money and should be included in healthcare reform.
No State Meets Community Living Obligation, Bazelon Report Says
Source: Disability Scoop, by Michelle Diament
No state adequately fulfills its obligation under the Supreme Court’s Olmstead decision to provide community-based living for people with disabilities, according to a report released Wednesday by the Bazelon Center for Mental Health Law.
The report, “Still Waiting… The Unfulfilled Promise of Olmstead,” details the current situation ten years after the court’s decision in Olmstead v. LC and EW. Under that decision, the court said that states have an obligation to provide care for people with disabilities in a community setting, where medically possible.
Currently, it’s unclear how many Americans are unnecessarily living in hospitals, nursing homes and other institutional environments because each state reports information differently. And that’s one of the biggest problems, the report indicates. Many, if not most, of the individuals in these situations could live in the community with supports at a lower cost.
The report recommends that states assess the number of people in their care who could be better served in community settings and shift funding from institutions to community-based supports. Further, on the federal level the report encourages an expansion of the Medicaid Home and Community Based Services Waiver, passage of the Community Choice Act and making mental health insurance coverage accessible to all Americans. To view the full report click here (PDF).
Report Supports Use of Nonpesticide Measures
Excellent news just came in about chemical-free abatement of cockroaches in 13 buildings of 5 public housing projects in East Harlem and Brooklyn. The New York City Housing Authority has trained its entire workforce of pest control professionals in integrated pest management (IPM) and suspended its use of pesticide sprays in residential units. The article below emphasizes that IPM in the units will benefit low-income children with asthma, but in fact this policy will help protect all residents with disabilities.
Nonpesticide Control Works Best on NYC Cockroaches
Source: Environmental Health News
Management measures that keep unwanted pests out of buildings and apartments can control cockroaches and their associated allergens better than traditional pesticide sprayings. This is the first study to show how a one-time, low cost visit by professionals can effectively reduce the insects' populations for up to six months. Sealing cracks and using bait traps--rather than periodic pesticide applications--to control the pests lowers people's indoor exposures to unhealthy toxic chemicals and allergens that can lead to asthma. Read More.
Current Voting Issues, Part II
This is the second of a three-part series of articles prepares by the NCIL Voting Rights Working Group. This week’s article covers HAVA and the Disability Vote Alliance. The Voting Rights Taskforce is part of the ADA/Civil Rights Subcommittee here at NCIL. Both the Voting Rights Taskforce and the ADA/Civil Rights Subcommittee are always seeking new members to be a part of their efforts to strengthen and support the rights of people with disabilities. If you are interested in joining the Voting Rights Taskforce, please contact Kathy Hoell by e-mail at khoell@cox.net. If you would like to join the broader ADA/Civil Rights Taskforce, please contact Mark Derry at adamarkd@aol.com.
What is the Help America Vote Act?
HAVA is a continuum of Civil Rights Legislation for Americans with disabilities, designed to maximize societal access. HAVA is one – albeit the most important one – of the gains toward societal accessibility obtained by persons with disabilities. There is nothing as important in this great Republic of ours as the assurance that every citizen has access to their right to the voting process in the same manner as everyone else, and that the vote cast is the vote counted.
Despite the fact that our great nation has finally crossed a historical milestone by electing the first African American President of the United States, many Americans with disabilities are still being denied the most basic tool to fully participate within the voting process. The voting process is instrumental in the exercise of political power by any one particular group. Such is the power of the disability vote.
The disability community comprises 20 percent of our nation’s population, making this the largest minority constituency in the country. However, the disability community is the least mobilized voting bloc, vote at a rate that is typically lower than the general population, and lower than the more organized minority constituencies. Because of this lack of a consistent, mobilized voting bloc, people with disabilities have limited access to the policymakers responsible for decisions that affect the lives of and services available to people with disabilities. This lack of political power is evidenced by disproportionate poverty and unemployment rates between people with disabilities and the general population; two-thirds of people with disabilities live below the federal poverty line, and 85% are unemployed or underemployed. This lack of power and involvement by citizens with disabilities within our political system must come to an end and it must begin - NOW!
If the disability community wants to be taken seriously by our elected officials, as they seriously compete for the vote of other groups, we need to show them that we are a consolidated and strong voting bloc. Every single person with a disability needs to VOTE in every single election to demonstrate our power as a group, and to ensure that the voting process will be fully accessible for as many people with disabilities as possible.
Join the Disability Vote Alliance Today! Toward maximizing and strengthening voter participation by persons with disabilities, a number of states have developed Voting Coalitions that are working on increasing voter participation and strengthening the power of the disability vote. There is the Disability Vote Alliance which is a state and national partnership for disability vote mobilization and there are organized state-wide Disability Vote Coalitions in 13 states.
Oregon Couple Seeks $14 Million for “Wrongful” Birth of Daughter with Down Syndrome
Source: The Oregonian, by Aimee Green
In the months before their daughter was born in 2007, Deborah and Ariel Levy worried the baby might have Down syndrome. They say a doctor at the Legacy Center for Maternal-Fetal Medicine assured them that a sample of tissue taken from the placenta early in the pregnancy ruled out the developmental disability, despite the results of later testing that showed the fetus might have it.
But within days of the birth of their daughter, the Southwest Portland couple learned the baby did have Down syndrome. Had they known, they say, they would have terminated the pregnancy. Now they're suing in Multnomah County Circuit Court, seeking more than $14 million to cover the costs of raising her and providing education, medical care, and speech and physical therapy for their daughter, who turned 2 this month. The suit also seeks money to cover her life-long living expenses.
The Levys declined to be interviewed. Their attorney, David K. Miller, said the toddler is as dear to them as their two older children but they fear being perceived as "heartless."
Arthur Caplan, director of the Center for Bioethics at the University of Pennsylvania, said fewer than 10 such suits -- for disabilities ranging from spina bifida to severe retardation -- are filed in the U.S. each year. "The reason they're rare is you are forced to take a position that's very awkward," Caplan said. "Parents don't like arguing it, and courts don't like hearing it." Parents must be willing to declare "we feel burdened to have this child," Caplan said. And in order for the suits to succeed, courts must be willing to rule that "it's better not to exist and give damages for having to exist," Caplan said.
Miller said his clients are "committed to the best possible life for their daughter." He said one of their role models is Karen Gaffney, a 31-year-old Portland woman with Down syndrome who earned a regular high-school diploma and an associate of science degree from Portland Community College and travels the nation as a renowned speaker. "They feel very strongly that what happened to them was wrong," Miller said. "They were given incorrect information, and their lives have changed because of it." Read More.
Mental Health Parity in Michigan Needs Your Support: Action Alert from Partners for Parity
Members of Michigan Partners for Parity were stunned yesterday when the House Health Policy Committee unanimously reported out HB 4476 and 4183, with a recommendation that they pass. These bills would require private insurers to provide coverage for the autism spectrum disorders and, for specific treatments. In other words, these bills would provide parity for individuals with autism spectrum disorders but would continue to discriminate against people with all other mental, emotional, developmental and20substance use disorders.
Michigan Partners for Parity deplores the lack of insurance coverage for autism and its related disorders. However, to support these bills without passing comprehension parity continues to discriminate against and stigmatize people with all mental and emotional disorders. Amy Zaagman, of the Michigan Association of Community Mental Health Boards summed up Partners’ frustration beautifully: “And so I come to share today that the mental health and developmental disabilities community remains hurt and confused as to why this committee views moving autism-only bills that amend the exact same sections of statute as anything other than discriminatory. We have reached out to the autism advocacy community to work together on comprehensive bills and have been rebuffed. We have, at every opportunity, given language to the sponsors of these bills as to how we could cover all Michigan families struggling with brain disorders and yet, we are here today on the verge of moving autism-only bills. Comprehensive bills have been done in other states and if we work together we are convinced it could be done here.”
For 16 years, MI Partners for Parity and its member organizations have fought to end discrimination against people with mental illness. Never has it been more important to have our legislators hear our voices. We need to let our elected officials know how important this issue is to so many, many people. Our lobbyists tell us we need 5,000 letters with a single message: Do not pass the autism bills without the parity bills. It is time to end discrimination against all people with brain disorders!
We need you to help get a letter tree going. The letters (snail or e-mail) should be addressed to Representative Andy Dillon, the Speaker of the House. These letters have to start pouring in before the end of this week.Just give the Speaker the message that you are shocked, dismayed, insulted, offended and hurt (use your own words) that mental health parity has been bypassed, marginalized, sidelined, and discriminated against in favor of singling out one disorder for a legislative mandate. Why is one child favored over another? We have many policy objections over the details of the autism mandate bills, but your message just needs to be simple, direct, and swiftly delivered: Do not vote on the autism mandate unless you also take a vote for mental health parity. We can and must snatch victory from the jaws of defeat. There are a number of members in the House who support us and do not want to see parity left behind. This apparent setback may be a blessing in disguise if each of us does the right thing and speaks up for parity.
Write to: The Honorable Andy Dillon, Speaker of the House / Michigan House of Representatives / PO Box 30014 / Lansing MI / 48909. Or send an e-mail to: andydillon@house.mi.gov
Illinois Advocates Hold Huge Protest over Human Service and Mental Health Cuts
Source: NBC
They came in wheelchairs and brandishing signs -- people with disabilities asking that they not be forced to suffer when the state budget axe swings. Hundreds descended on the Thompson Center on Monday to rally against cuts they say would affect the quality of their lives. Protesters held signs that read, "Illinois is wasting money," "Save our services," and "Institutions never work."
"People want to live in the community. People who are in the community are successful. Those placements are going to be cut, and people are going to have to go back into institutions," said Barry Taylor, with Equip for Equality.
The goal of the protest was to catch the attention of legislators who return to Springfield tomorrow in an attempt to patch a $9.2 billion budget shortfall. But the question remains: who will have to pay?
Sharon Cosgrove was once institutionalized with an eating disorder. "They put me in restraints because I would bang my head. I'd say, 'No, I'll stop. I'll stop. They dehumanized me," she said.
Cosgrove is one of 5,000 people helped each year by the Anixter Center. But the $22 million it gets from the state has already been cut by $6 million, and stands to lose $6 million more. "It's a disaster -- 1,700 people will lose services if we have to implement it. We will lay off close to 100 staff," the Anixter Center's Allan Bergman said.
Sharon, who was planning to go to college in the fall, wonders what will happen to her. "We can't have these cuts. I am so scared we're going to lose our home," she said. Watch a video of the march!
Kathy Martinez Confirmed as ODEP Assistant Secretary
From the Senate Daily Digest: Kathy Martinez was confirmed by the Senate Thursday, June 25 as ODEP Assistant Secretary. Blind since birth, Martinez, who has worked as executive director of the World Institute on Disability (WID) since 2005, has worked in employment, asset building, independent living, international development, and diversity and gender issues in her work at WID. For more information on Martinez see her profile from National Journal: http://www.nationaljournal.com/decisionmakers/dm/349/.
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June 29, 2009