BellaOnline Forums Family Special Needs Children Barack Obama and Disability Policy

David Axelrod was the chief strategist of the Obama campaign, and now serves as senior White House adviser.

�Complete freedom from seizures � without side effects � is what we want,� Susan says. �It�s too late for us, so we committed ourselves to the hope that we can protect future generations from having their lives defined and devastated by this disorder.�

February 15th, 2009
Wife of key Obama aide shares family�s journey with epilepsy
By Melissa Fay Greene in Parade magazine:

When 27-year-old Lauren Axelrod was diagnosed with epilepsy as an infant, her parents Susan and David were given scant information about the condition that was triggering dozens of brain-damaging seizures a day. They didn�t know the seizures would resist all efforts to control them, that available drugs caused devastating side effects, and that there was little ongoing research to help the 50 million people worldwide who share Lauren�s diagnosis.

Once again, the power of grassroots advocacy has proven to make a difference!

Our call for Community Choice Act (CCA) and other long term service and supports to be addressed by the Obama Administration and for them to work with Congress to pass the Community Choice Act in 2009 will be discussed next week on a phone call between ADAPT representatives and representatives from the Obama Administration, including the Domestic Policy Council, Office of Public Liaison and Special Assistant to the President on Disability Issues.

Now that we have a meeting with the Obama Administration to discuss passing the CCA, it's important that we get Congress working on our legislation. We need people to contact their Senators and Representatives in the House to ask them to sign on as original co-sponsors of the Community Choice Act.

ADAPT members across the country have been going to the local offices for their Representatives and Senators asking them to sign on as original co-sponsors of the Community Choice Act. Keep up those visits! They are really effective.

People can also contact the Washington offices.

Here are two links that allow you to send an email or fax to your Representative or Senator. If you can, personalize your letter.

Tell your own story or the story of someone important to you. Explain why we need to reverse the institutional bias and pass CCA. This is YOUR letter to the people who represent you.

After you do this, forward this email and ask other
people to respond as well. It's important that every Senator and Member of Congress hear from us!

Contact your Senators

Contact your Representative in the House:

Contact your Representative in the House

Keep up the great work!

DON'T MOURN...CONTINUE TO ORGANIZE!

CCA in 2009!

Date: Tue, 24 Feb 2009
Subject: An exciting development
FOR IMMEDIATE RELEASE
Northwest Down Syndrome Association
Website: www.nwdsa.org

NWDSA Photo Gallery Going to Washington, DC
The Northwest Down Syndrome Association (NWDSA) is pleased to announce that the award-winning All Born "In" traveling photo gallery will be displayed in the U.S. Capitol in Washington, DC in the end of February.
Members of the NWDSA Board of Directors will be traveling to Washington to participate in a national Down syndrome conference. We are an all-parent board and this is an exiting experience for us.
The cross-disability banner display featuring Oregon and Washington families will be a part of a legislative reception held on Capitol Hill to help bring attention to issues faced by families and individuals who live with disabilities. ....
The Board of the NWDSA is made up of parent volunteers, who have dedicated many hours of their time to advance the group's mission of creating a more inclusive society.

Thank you,

NWDSA Board of Directors

Chris Schultz�s father, Donald, is unemployed and trying to find a job as accountant. His mom is a teacher�s assistant and doesn�t make enough to cover the $900 monthly rent. Their apartment is so small that Chris sometimes gives up his bedroom and lets his little brothers Joseph and David, who has Down�s Syndrome, sleep in his room.
He plans to join the Army in June but is worried that if his parents, who are behind in the rent, lose their apartment his little brothers will be homeless.

Internationally recognized disability-rights leader Kathy Martinez was nominated for assistant secretary for the Office of Disability Employment Policy (ODEP) by President Barack Obama on March 20.


..."As a Latina who is blind, I have first-person experience with the low expectations and assumptions of the majority culture," Martinez says. "I have seen many disabled Latinos live down to these diminished expectations. They become overwhelmed by isolation, are disconnected from the service-delivery system and don't have disabled Latino professionals to look up to or network with. Unfortunately, even those who do access resources often are not receiving appropriate service." ...

...
No stranger to the White House, Martinez was appointed by former President George W. Bush in 2002 as one of 15 members of the National Council on Disability, an independent federal agency advising the president and Congress on disability policy.

Martinez did not face diminished expectations even though she and a sister, Peggy, both are blind. In a radio interview, Martinez said, "My mom did not want [us] to go away from the family to go to the school for the blind. So Peggy and I were [two] of the first disabled kids to go to our public school, and we had teachers that expected a lot of us. And they were tough. One of the biggest battles that disabled children and young people face is low expectations. If you expect someone to do well, very often, they will."

... New York Times report that Kareem Dale, President Obama�s special assistant for disability policy, has been chosen to be the president�s staff adviser on arts and culture. The story �left jaws dropping in both the arts and disability camps,�...

... The president certainly was sorry about it; he immediately apologized. But when you look at his overall record for people with disabilities in this administration and things he�s already done in terms of appointing three people in the White House, in terms of the SCHIP legislation signing, stem cell research, what he�s already done, I think his record speaks for itself and I think that�s the message that folks should take away from it.�...

... I would just encourage the disability community, as hard as it is sometimes, to be patient with us and recognize the great accomplishments of the first two months and just look forward to other things to come down the road.� ...

This March, a long-term care "anti-trust" law, the Community Choice Act, was introduced in Congress. This law will make available to people with disabilities who qualify for nursing home services the choice to receive their services in their own communities, rather than in an institution. This is no new entitlement -- it's only for people who already qualify for nursing homes. This is about choice, a free market and a level playing field. ...

... Federal law only provides immediate entitlement funding for nursing home care, creating a nursing home monopoly. Though almost universally cheaper, community supports, such as attendant services for people with disabilities in their homes, often require waits of a decade. ...


Help the disabled stay where we all work, recreate, celebrate, shop and marry. Encourage your congressmen to co-sponsor this vital act.

Jerry Costley
Executive director Disabled Rights Action Committee
Centerville

Disability advocates from around the country gathered at a meeting to rally with lawmakers as the Community Choice Act (CCA) was introduced in both the House and Senate. Among the participants were Senator Tom Harkin (D-Iowa), sponsor of the legislation, and Congressman Danny Davis (D-III).

�The legislation allows states and consumers to obtain more cost effective long-term services in the most appropriate setting for the individual. Individuals with disabilities will be able to choose between services in an institution or services at home permitting more independence, more dignity and reduced cost,� said Davis.

Harkin stated that the CCA will help people with disabilities to spend money as they want to and not to be dictated by the government. He said that the CCA protects civil rights that every American citizen is entitled to. Harkin also acknowledged President Obama�s effort and contribution to the CCA. Harkin emphasized the importance of Obama�s focus on health care and his engagement in the CCA. By having a friend in the White House �our time has come,� said Harkin.

March 26, 2009

... investing resources in home and community-based care not only can provide services that people prefer but over time actually slow the growth in total long-term care spending by reducing reliance on costly institutional care.

Different approaches would expand the availability of home and community-based services in Medicaid in different ways. For example, the Community Choice Act, S. 799... ... the Empowered at Home Act, S.3327 ... States could also extend disability-based eligibility for home and community-based care to people whose conditions have not yet deteriorated to a nursing-home-equivalent level of need so they are actually able to manage in their homes.

These changes would overcome restrictions that have limited states� interest in amending their state Medicaid plans�as allowed under the Deficit Reduction Act of 2005�to broaden long-term care services in the community. For states that choose to expand in these ways, the bill would also eliminate states� ability to cap enrollment and waive state-wideness requirements. If states take up the option, these changes could assure far broader availability of home and community-based care in many states. If made mandatory, or funded more extensively by the federal government, people in need of long-term care could be better and more efficiently served in all states.

... a new Illinois law will require insurance companies to provide �habilitative� therapies for youngsters with developmental disabilities to gain new skills. Previously, coverage was limited to children receiving �rehabilitative� therapies to recover lost skills. ...
... Similar laws are on the books in Maryland and the District of Columbia. ...

... As a person with a spinal injury who uses a wheelchair, he relied on Medicare, Medicaid, Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) himself during his college years. ...
... He has served ... as senior advisor in the Social Security Administration�s Office of Disability and Income Support Programs in the Bush administration, and senior advisor for disability policy to the Administrator of the Centers for Medicare & Medicaid Services during the Clinton administration.