Disability Futures

A young mum who developed locked-in syndrome after suffering a massive stroke has completed a university degree - by blinking. Dawn Faizey Webster was left unable to walk or talk following the stroke -which happened just two weeks after her son Alexander was born. The former teacher discovered she could still communicate through her eyes and tiny head movements and vowed to continue with her life. And incredibly 11 years later she has achieved a 2:2 degree in Ancient History using a laptop that translates her eye movements into text. Dawn's fastest writing pace of 50 words per hour meant each three hour exam took her three weeks to complete.

Under the ABLE Act, families would be able to set aside funds into a tax-free savings account.  The funds could be withdrawn to cover costs associated with health care, employment, housing, transportation, and education.  The funds would supplement but not replace benefits provided by Medicaid, Social Security, and private insurance and would not jeopardize a child’s eligibility for federal benefit programs.

Thousands of people with intellectual and developmental disabilities are being illegally denied the right to vote, advocates say.

In a complaint filed Thursday with the U.S. Department of Justice, advocates with the Disability and Abuse Project said that California judges are routinely restricting the voting rights of adults with disabilities who are under limited conservatorships, also known as guardianships.

Judges are using literacy tests to determine if individuals should be allowed to vote in violation of the Voting Rights Act of 1965, the complaint alleges. What’s more, advocates say that court-appointed attorneys representing people with disabilities have been instructed by judges that individuals under limited conservatorships cannot receive assistance in completing voter registration forms or ballots.

“What is happening in Los Angeles is the tip of the iceberg,” said attorney Thomas F. Coleman, who filed the complaint. “The problem of voting rights violations of people with intellectual and developmental disabilities is not isolated to Los Angeles. Such civil rights violations are occurring elsewhere in California. Indeed, this is happening in many states throughout the nation.”

Two years after rejecting an international disability rights treaty, the U.S. Senate is poised to reconsider the matter.

The Senate Foreign Relations Committee approved the United Nations Convention on the Rights of Persons with Disabilities by a 12 to 6 vote Tuesday.

The treaty, which establishes an international standard for disability rights similar to what’s already in place domestically through the Americans with Disabilities Act, is now headed to the full Senate where it would need a two-thirds majority vote to be ratified.

This is the second time that the U.N. Convention is making its way through the Senate. The same committee also approved the treaty in 2012 before it failed on a largely party-lines vote that year in the full Senate.

A coalition of more than 800 disability, civil rights, faith, business and veterans organizations favor ratification. But the treaty has faced stiff opposition spearheaded by the Home School Legal Defense Association. The group contends that the treaty would compromise U.S. sovereignty and threaten the ability of parents to determine what’s best for their kids.

Imagine that based on that diagnosis, a judge decides that you are unfit for custody of your child. Imagine that you have been the primary caregiver for your child or children and then someone who has never seen you interact with your children, who has never entered the home you run decides that you are not as able to take care of your children as your spouse.

This happens all across the United States and it is wrong.

No one should be discriminated against based on disability. When determining custody the issue should not be the presence or absence of a disability but the care that will be given to a child. Maybe the person with a disability is a good person who married a person without a disability who is a bad person -- a drinker, an abuser, someone who is neglectful, etc.

An Important Document for all aspects of person centered planning....

Wednesday, August 6th

3:00pm EST

The Autistic Self Advocacy Network is excited to announce an upcoming webinar on our recently released model legislation for supported decision making in healthcare contexts. 

Often, people with intellectual and developmental disabilities are placed under guardianship - and thus lose the right to make their own choices about their lives - based on their need for support when making health care decisions. Doctors and service workers may tell families to seek guardianship because they think it is the only way to make sure that people with disabilities get the support or advice they may need in order to get the health care they need. Sometimes, doctors may even refuse to treat a person with an intellectual or developmental disability who doesn't have a guardian, due to a belief that people with disabilities cannot give "informed consent" to health care. 

The model legislation, which ASAN developed in collaboration with the Quality Trust for Individuals with Disabilities, would enable people with intellectual or developmental disabilities to name a trusted person to help communicate with doctors, understand health care information, make informed decisions about health care, and/or carry out daily health-related activities. Unlike guardianship, supported decision-making arrangements let people with disabilities keep the ability to make their own decisions. Advocates can use this model legislation and ASAN's Questions and Answers resource when talking to their state legislators about ways to support people make independent health care decisions.  

Successfully Passed Out of the Foreign Relations Committee