1) What’s Happening in the Nation’s Capital?

Countdown to 2009 NCIL Annual Conference

ADAPT Hits DC, Demands Long Term Care Be Included in Healthcare Reform

NCIL Opposes Obama Nominee to the Maryland Seat of the Fourth Circuit Court of Appeals

2) National News

The Budget is Coming! The Budget is Coming!

Governor Kathleen Sebelius Recommended for HHS Secretary by Senate Finance Committee

Petition to Help End Discrimination Against People with Autism

3) State News

Another Child with a Disability Murdered by Neglect; Motive: Welfare Fraud

4) Announcements and Additional Resources

Google Lime Scholarship for Students with Disabilities

1) What’s Happening in the Nation’s Capital?  

Countdown to 2009 NCIL Annual Conference

The countdown is on! Next month NCIL will host our 2009 Annual Conference “Believe: We Are Better. Reenergize, Reorganize, Reauthorize!”

The NCIL staff is busy putting together the policy booklets and preparing for advocates to hit the Hill in early June. This year, NCIL policy staff has been tightly focused on the American Recovery & Reinvestment Act, which included funding for Centers for Independent Living. This is a new year for the Independent Living Program, which is used to scraping by. We have the opportunity to change our communities and free our people from institutions.  

Other hot issues include the healthcare reform debate. NCIL is working diligently on the passage of the Community Choice Act. Push back is coming from the Governors and the State Medicaid Directors. Contact your Governor and the Medicaid Director and let them know the CCA is good for people and the nation as a whole. We have scientific research stating states will save Medicaid dollars by allowing money to follow the person into the community to receive long term care services. The time is now to include Community Choice Act in healthcare reform! 10 ADAPT members met today with Obama’s Health Care Czar Nancy Ann DeParle.  She stated long term care would NOT be included in healthcare reform.  Focus needs to be paid to our Governors and Medicaid State Directors!

The aging community is out in force acquiring additional funding to provide services to the aging and people with disabilities. In order for Independent Living to obtain recognition for all the work they do, Centers must develop a relationship with their State Unit on Aging. For more information on ADRCs contact Elizabeth Leef at the NCIL office 202-207-0334 or email elizabeth@ncil.org.  

ADAPT Hits DC, Demands Long Term Care Be Included in Healthcare Reform

Source: ADAPT

500 ADAPT activists from throughout the US, including 50 Texans, lined up outside the Whitehouse calling for President Obama to include the Community Choice Act and long term services and supports in his health care reform proposals.
10 ADAPT activists met with Obama Health Care Czar Nancy Ann DeParle.

At about 2:00pm 100 people were chained to the White House fence after President Obama's Health Care Czar Nancy Ann DeParle stated with no reservation that long term services and supports WILL NOT be in health care reform. She told 10 ADAPT activists that they can't do it in the timeframe set and that we would have to live with the institutional bias. Arrests are occurring.

Police Arresting Angry Members of the Disabled Community Who Are Picketing White House

Source: ABC News, by Jake Tapper and Sunlen Miller

Police have started to arrest some of the disabled protestors picketing outside the White House right now. Almost all of the 400 demonstrators are in wheelchairs. "Shame on you, Obama is a liar! Shame on you, Obama is a liar!" some are chanting.

They're here from all over the country -- Texas, Montana, New York, Pennsylvania -- to protest what they see as President Obama not sufficiently supporting the Community Choice Act, a bill that would amend the Social Security Act to provide those with disabilities and older Americans the ability to use federal funding for community-based attendant services instead of just for nursing homes.

ADAPT wants the Community Choice Act to be included as part of the overall health care reform package. White House health care czar Nancy-Ann DeParle told some members of ADAPT this morning that President Obama as a candidate supported CCA, but not as a part of the overall health reform effort.  Sen. Tom Harkin, D-Iowa, and Rep. Danny Davis, D-Illinois, introduced the bill last month.*

"The President supports CCA and was in fact a co-sponsor of it when he was in the Senate," says the administration's spokesperson for health reform, Linda Douglass. "He hasn't signed it into law because there is nothing to sign yet.  It was introduced at the beginning of the year and has been referred to the Energy and Commerce Committee."

"Take me inside with you right now and I'll call Obama a f------ liar to his face," says Peggy Dougherty, 69, from Easton, Penn, who has handcuffed herself to the White House gate. Dougherty, who suffers from multiple sclerosis, has an Obama/Biden pin on her purse. She voted for the Democratic ticket, she says. "He made a promise and he broke it," she says.

Many of the protestors here today are members of the disability rights group ADAPT. According to an "action alert" sent by the Center for Disability Rights, ADAPT members were told by that "(d)espite featuring the Community Choice Act (CCA) prominently in the presidential campaign, President Obama's administration, including Ms. DeParle, has again demonstrated that they are unwilling to take leadership and capitalize on the promise of healthcare reform to pass CCA. ADAPT has been part of prior meetings with the Obama administration which also failed to yield any commitment to call for CCA to be part of healthcare reform."

Continues the action alert: "In response to the Obama administration's refusal to demonstrate leadership, ADAPT activists have chained and handcuffed themselves to the Whitehouse fence.  They are refusing to leave until President Obama fulfils his campaign commitment to support passage of the CCA.  ADAPT is demanding that President Obama create the change that Americans with Disabilities need: the Community Choice Act!"

"This is about choosing to live in our homes in our communities instead of nursing homes," says Milagros Franco, from the Brooklyn Center for Independence of the Disabled.
"I'm a survivor of a nursing home," says Eileen "Spitfire" Sabel. "I could tell you stories that would curl your hair."

As senators, both President Obama and Vice President Biden co-sponsored the Community Choice Act. During the campaign, then-Sen. Obama said the "legislation is vitally important to the independence, community integration, and equality of hundreds of thousands of Americans with disabilities," that it will help to empower them "to take full advantage of their talents" and "ensure that everyone can live independently as full citizens in their communities.”

A man in a wheelchair handed me two ADAPT fliers. "The squeaky wheel gets the grease," says one. Reads another: "You think prison is bad, trying living in a nursing home."

UPDATE: Harkin communications director Kate Cyrul emailed ADAPT to say: "Discussions about what will and will not be in the health reform package are currently underway, and no final decisions have been made.   Senator Harkin has made clear that any health care reform package is incomplete if it does not address the right of individuals with disabilities to choose to live in the community and receive supportive care, services they are currently entitled to only in an institutional setting.  Senator Obama was a cosponsor of the Community Choice Act in the 110th Congress, and made support for the legislation a key part of his disabilities platform during the campaign."

NCIL Opposes Obama Nominee to the Maryland Seat of the Fourth Circuit Court of Appeals

Judge Andre Davis has a poor record in the area of Employment Discrimination

On Thursday, April 23, NCIL’s Executive Director, John Lancaster, along with other national disability organizations, met with officials from the White House to discuss opposition to Judge Davis’ nomination to the Fourth Circuit Court of Appeals. The meeting was a chance for disability rights advocates to explain the opposition to the nomination, despite the Obama Administration’s assertion that Judge Davis has a good track record on civil rights. While Judge Davis has decided favorably for people with disabilities in cases regarding physical accessibility, his record on employment discrimination does not respect the ADA and Congress’ intent. Judge Davis’ inability to correctly interpret the meaning of disability and the ADA leaves NCIL and other advocates concerned about future misunderstanding about the ADA Amendments Act, signed into law last year.

The White House will continue to support Judge Davis’ nomination, despite the concerns addressed at Thursday’s meeting. While NCIL is not satisfied with that decision, and will oppose the nomination, the White House did offer to spend more time vetting future nominees, specifically about their track record on disability issues. The White House will work with NCIL and other organizations to make sure that the voice of people with disabilities is heard when making judicial nominations.

NCIL will provide additional information about our opposition to Judge Davis in the near future. We will seek the support of our membership in advocating with the Senate to derail his confirmation.

2) National News

The Budget is Coming! The Budget is Coming!

Committees in the U.S. House and Senate have been burning the midnight oil by putting together their respective versions of a federal budget for Fiscal Year 2010. The Federal Budget process is a complicated one, but the most important process for funding the programs and services we all rely on for employment, health, safety, and our way of life. To make things a little easier to understand, here is a simplified estimate of the timeline for achieving a federal budget this year. Please note that these timeframes are only estimates and typically change.

2009 Timetable for FY 2010 Federal Budget

January

• Congressional Budget Office (CBO) releases projected deficits

February

• 2-26: President Obama released his preliminary budget plan with rough estimates and few details. Detailed plan coming in Spring.

March

• 3-11: 2009 Omnibus Bill Signed into law
• 3-20: CBO releases new budget deficit projections
• Week of 3-23: House and Senate Budget Committees mark up FY2010 Budget Resolutions (their general versions of the budget)
• Week of 3-30: Resolutions passed by House/Senate

April

• 4-20 to 5-1: Congress finalizes FY 2010 Budget Resolution

May

• First week of May: President Obama is expected to submit a detailed budget plan
• Mid-May: Appropriations Subcommittees (there are 12 of them and they include HUD, Agriculture, etc…) receive their allocations for FY 2010. Once these Allocations are determined and sent to the Subcommittees, the total amount appropriated cannot be increased. That means if a particular housing program in HUD is proposed to be underfunded, the only way increase the amount is to take money from somewhere else in HUD.

June and July

• House/Senate Committees mark up FY 2010 Appropriations bills, sometimes in late May, but most likely in June/July. There could possibly be a vote in each full chamber of Congress before Congress has its recess in August – not common.

August

• Congressional Recess

September

• Federal Agency Fiscal Year 2011 requests due to the White House Office of Management and Budget (OMB). This is for the President to begin working on the next budget, even if before the 2010 budget is done.

October, November, and December

• FY 2010 Budget Process should be done or near done at this time
• FY 2011 budget requests finalized

For a more detailed explanation of the budget process, the Center on Budget and Policy Priorities has terrific information on the subject (http://www.cbpp.org/files/3-7-03bud.pdf).

Governor Kathleen Sebelius Recommended for HHS Secretary by Senate Finance Committee

On Tuesday, April 21st, by a vote of 15-8, the Senate Finance Committee voted mostly along party lines to recommend Gov. Kathleen Sebelius (D-KS) for confirmation in the full Senate. Some of the no votes were due to Republican Senators’ concerns over her support of abortion rights, while others expressed dissatisfaction with her answers to questions raised during confirmation hearings. Senate Minority Whip Kyl criticized the nominee's position on healthcare policy, arguing that she would eliminate choice, particularly in treatment options. Kyl said she failed to promise the government would "not use comparative effectiveness research as a tool to deny care." The latest stimulus package included $1.1 billion for research that compares the effectiveness of medical treatments. Some Republicans argue such research could be used to block access to the best care.

Due to these concerns, some Republican members of the Senate were threatening to hold up the nomination through the filibuster process until Senate Majority Leader Harry Reid reached a deal with Republicans. The vote might come as early as tomorrow, April 28th. The deal will allow debate on the nomination for up to eight hours in return for enough republican votes to reach the 60-vote threshold to end a filibuster and hold vote on her confirmation. The Health and Human Services Secretary is the final cabinet position to be approved for the President.

Petition to Help End Discrimination Against People with Autism

Source: Autistic Self Advocacy Netowrk (ASAN)

I'm writing to ask you to sign our petition, calling on Dr. Tony Attwood and Dr. Isabelle Hénault, two respected experts in the world of Autism, to disassociate themselves from hate groups promoting stereotypes and libels that seek to encourage discrimination against Autistic people in family law and relationships. We in the disability community have long suffered from many forms of discrimination, stereotyping and discrimination. Historically, one of the most pervasive forms of this type of discrimination has come from those who use stereotypes and psuedo-science to try and deprive us of one of the most common ways of expressing membership in the human community - the right to have a family, to marry and to raise children on an equal basis with any other citizen. The eugenics movement is one of the most well known examples of this dangerous and unethical means of discriminating against people with disabilities, as is the related idea that disabled people are inherently unfit as spouses or parents. In the name of these kinds of stereotypes, people with disabilities have been deprived of parental rights and discriminated against in divorce and child custody cases for generations. In the Autistic community, we face opponents who seek to propagate these same forms of hatred, often claiming to do so either for our own good or wrapped in the guise of the same types of false science that justified the involuntary sterilization of hundreds of thousands of individuals worldwide who were deemed unfit to raise children.

For the last decade, groups like Families of Adults Afflicted with Asperger's Syndrome (FAAAS) have been promoting the idea that prolonged family contact with Autistic adults in romantic or family relationships is harmful to "normal" people. Amongst other methods, they have done this by promoting "Cassandra Affective Deprivation Disorder," a term invented by British psychologist Maxine Aston. Cassandra Affective Deprivation Disorder, a condition developed by Aston and which serves as the basis for much of her marketing and income, is claimed by Aston to be a depressive disorder caused by romantic involvement with an Autistic person. CADD is based entirely upon pseudoscience, personal grudges, and stereotypes rather than any form of accurate research or evidence. CADD has never been recognised by any psychological association and is not supported by any peer-reviewed scientific research. Aston and others involved with such groups have purported to diagnose clients with CADD, despite having no legitimate authority for doing so. In CADD support groups, clients are encouraged to "vent" about the failures of their partners and to characterise Autistics in general as unsuitable for family life.

We're asking you, regardless of your background or interest in Autism or cross-disability issues, to join us in signing this petition to help secure the rights of all people to be treated equally under the law. Our petition can be found at: http://www.ipetitions.com/petition/AttwoodHenault/ and if you are interested in e-mailing directly tony@tonyattwood. com.au is the e-mail address for Dr. Attwood and ihenault@internet. uqam.ca is the e-mail address for Dr. Hénault. Thank you for your support. Together, we can mobilize our community and stop discrimination wherever it rears its ugly head.

As always, Nothing About Us, Without Us!
Ari Ne'eman, President, The Autistic Self Advocacy Network

3) State News

Another Child with a Disability Murdered by Neglect; Motive: Welfare Fraud

Source: The Associated Press, MSNBC

Flint, Michigan - A 9-year-old quadriplegic girl whose body was found in a storage unit suffered from "severe, ongoing malnutrition and neglect," a prosecutor said Friday after charging her adoptive mother with murder. Genesee County Prosecutor David Leyton charged 39-year-old Lorrie Thomas of Flint with six crimes, including second-degree murder, child abuse, tampering with evidence, removing a dead body and welfare fraud over $500.

Shylea Myza Thomas weighed 33 pounds at her death — about half her weight of 61 pounds in August 2007, Leyton said at a news conference. The girl had untreated bed sores and bones sticking through skin, he said. "Nobody should die like this. ... The child suffered — there's no question about it. It's heart-wrenching to every one of us," he said.

Investigators believe Shylea died about six weeks ago, around the time the storage unit was rented, Leyton said. He said she was supposed to be fed special, prescription food through a tube attached to her stomach. Thomas is accused of cashing a check April 13 that included a monthly stipend for the girl of $2,884.

Thomas has been in custody since Wednesday, when investigators found the girl's body in the storage unit near Flint, 65 miles northwest of Detroit. The body was in a black trash bag and stuffed into a plastic bin with mothballs to cover up the smell.

Thomas, dressed in orange jail clothes, cried Friday at her arraignment in District Court in Flint. Judge Tracy Collier-Nix ordered her held without bond and set her next court appearance for Tuesday. She was to get a court-appointed lawyer. If convicted of the murder charge, Thomas could face life in prison. Read More.

4) Announcements and Additional Resources

Google Lime Scholarship for Students with Disabilities

Access to knowledge is our thing. When it comes to higher education for promising scholars, we don’t want anything to stand in the way. That’s why we’re proud to partner with Lime. Google is committed to helping the innovators of the future make the most of their talents by providing scholarships and networking retreats for computer science students with disabilities. Recipients of the Google Lime Scholarship will receive a scholarship for the 2009–2010 academic year.

Selected students will also be invited to attend the all-expenses-paid retreat at the Googleplex in Mountain View, CA, in 2010. Scholarships will be awarded based on the strength of candidates’ academic background and demonstrated passion - $10,000USD for those studying in the US and $5,000CAD for those studying in Canada (based on average tuition costs).

Eligibility Requirements - Candidates must be:

• A student entering their junior or senior year of undergraduate study or be enrolled in a graduate program in the 2009–2010 academic year at a university in the United States or Canada (in addition to US and Canada citizens, international students with disabilities studying at universities in the US or Canada are also encouraged to apply)
• Enrolled in a Computer Science or Computer Engineering program, or a closely related technical field as a full-time student for the 2009–2010 academic year
• A person with a disability (defined as someone who has, or considers themselves to have, a long-term, or recurring, issue that impacts one or more activities that others may consider a daily function); this definition also includes the perception among others that a disability exists

How To Apply - Candidates will apply online via the Lime online application process, and provide the following:

• Contact and education information
• Current resume
• Academic transcripts
• Answers to essay questions
• Two recommendation letters from a professor, adviser or supervisor

For application materials see: http://www.limeconnect.com/google.html.