Advocacy News

 

Contents

April 2015

Stark Realities Of Autistic Adulthood | NPR

You don’t outgrow autism. But a wave of autistic children is growing into adulthood. What’s going to happen then? >> read more

Feds Take Aim At Sheltered Workshops | Disability Scoop

The Obama administration is proposing new regulations that would sharply limit people with disabilities from entering employment situations where they earn less than minimum wage. >> read more

March 2015

If I were Prime Minister: People with a learning disability would be considered in all my decisions | Independent UK

A series in the run-up to the General Election – 100 days, 100 contributors, but no politicians – continues with Mencap’s Parliamentary Affairs Assistant >> read more

For adults with autism, a lack of support when they need it most | Washington Post

Bundled up in a puffy green coat, Moore, 35 and sandy-haired, doesn’t stand out in the crowd seeking refuge from the winter cold in a drafty Starbucks. His handshake is firm and his blue eyes meet mine as we talk. He comes across as intelligent and thoughtful, if perhaps a bit reserved. His disability — a form of autism — is invisible. >> read more

Program Would Offer Job Training to 100 Young Adults With Autism | Hartford Courant

This first-ever vocational program – laid out in a bill that is before the legislature’s human services committee – is intended to begin to address two problems: high unemployment among adults with ‪#‎autism‬, and the difficulties many find with living independently. >> read more

Reynoldsburg mom seeks care for severely autistic son | The Columbus Dispatch

These stories just keep being told and retold by parents and caregivers all over the country. We need more options for individuals with ‪#‎autism‬. We can’t put this off any longer. The need is urgent. >> read more

Underfunded disability program leaves families waiting years for aid | Sante Fe New Mexican

Don Bustos and his 20-year-old son, Emilio, rise early and their days are long. The father dashes off to tend to his fields, and his son, a high school senior, catches the bus to Española Valley High School. >> read more

People With ‘Invisible Disabilities’ Fight For Understanding | NPR

Some disabilities are more obvious than others. Many are immediately apparent, especially if someone relies on a wheelchair or cane. But others — known as “invisible” disabilities — are not. People who live with them face particular challenges in the workplace and in their communities. >> read more

Why you should never make assumptions about people with autism | The Independent

The idea that all people with autism are disordered, impaired, or somehow “lesser” is one that still needs to be challenged >> read more

Mother seeks more resources for teens with autism | YouTube

We need more ‪#‎autism‬ training for first responders and medical technicians. Difficult situations (like the one you will hear about in this video below) will just keep happening over and over again if we, as a society, don’t step up to the plate.

Eden Autism Services Public Comment

The following link is a PDF to Eden Autism Services’ public comment that voices concerns regarding New Jersey’s proposed State Transition Plan. >> read PDF

February 2015

Real Stories Real People: Michael

“My name is Mary and my son, Michael, is 30 years old. He is deaf, cannot speak and has signs for only a few words. Since he graduated from high school he has stayed at home. Michael helps me around the house. But, mostly he plays with his blocks and stays in his room.” >> read more

Adults with autism are left to navigate a jarring world | Science News

Researchers turn attention to a growing population of adults with autism spectrum disorders >> read more

George the Poet: Jokes about autism are ignorant | BBC News

George the Poet says people who joke about autism are “ignorant”. >> read more

January 2015

Hiring Workers with Disabilities at Starbucks Largest Distribution Plant | Starbucks Newsroom

Companies, like ‪#‎Starbucks‬, that give individuals with ‪#‎disabilities‬ an opportunity to work often end up with some of their most loyal employees …The investment in training often results in a high retention rate. >> read more

Obama Left a Critical Group Out of His Free Education Plan | New Republic

While we commend Barack Obama’s proposal to make two years of community ‪#‎college‬ free for students who maintain a 2.5 GPA and attend classes at least half-time, we must also ensure that education is more accessible to those with I/DD. >> read more

10 Questions to Ask a Lawyer before Hiring One for Your Disability Case | Disability Blog

Important stuff right here. >> read more

Is the U.S. Prepared for a Growing Population of Adults With Autism? | US News & World Report

Are we ready? >> read more

December 2014

Casey’s ABLE Act Becomes Law with President Obama’s Signature | Robert P. Casey, Jr.

ABLE Easily Passed the Senate 76-16 / Bill Previously Passed the House with 404-17 Margin / ABLE Has Been Called “…the broadest legislation to help [people with disabilities] in nearly a quarter-century.” >> read more

Tax-Free Disability Savings Bill Headed To Obama | Disability Scoop

Lawmakers voted 76 to 16 to approve the bill as part of a package of tax measures Tuesday evening. The legislation will now go to President Barack Obama to sign. >> read more

A Concerned Dad Asked Me, ‘What Will Happen to My Son With Autism When I’m Gone.’ This Is My Answer. | The Mighty

At an Autism Society autism conference I attended a few years back in Orlando, Florida, a father, probably in his sixties, approached me. He had a nonverbal son. We discussed his son’s need for an aide and several supports. Then he asked me one of the most difficult questions I’ve ever been asked as an autism advocate: “What do you think will happen to my son when I’m no longer here?” >> read more

House Passes ABLE, Final Senate Vote Expected Shortly | Autism Votes

 The U.S. House of Representatives today approved the ABLE Act 404-17 allowing tax-free savings accounts for individuals with disabilities and sent the bill to the Senate for final Congressional action. >> read more

Lawmakers Poised To Vote On ABLE Act | Disability Scoop

“This is historic for the disability community,” said Sara Weir, interim president of the National Down Syndrome Society, which has pushed for the ABLE Act since 2006. “I can’t think of another piece of legislation that puts a stake in the ground that says that people with disabilities can work and save money.” >> read more

Two sides of disability housing debate | Delaware Online

People with ‪#‎disabilities‬ shouldn’t be given a limited set of housing options. The regulations are in place to make sure individuals are in a setting they want to be in, that allows them to thrive with the supports they need individually. >> read more

November 2014

Pope’s Address to Autism Conference | Zenit

Assistance to people affected by autism spectrum disorders would benefit greatly from the creation of a network of support and services on the ground that are comprehensive and accessible. These should involve, in addition to parents, grandparents, friends, therapists, educators and pastoral workers. These figures can help families overcome the feelings, that can sometimes arise, of inadequacy, uselessness and frustration. >> read more

No Longer ‘Falling Off the Cliff’ | The Chronicle of Higher Education

Programs like Cutting Edge provide a way for colleges to respond to what many disability advocates call “falling off the cliff.” >> read more

Mainers with disabilities to gain Medicaid services in lawsuit settlement | Portland Press Herald

The state has settled the class-action lawsuit filed last year on behalf of people with autism and intellectual disabilities who were waiting for services. >> read more

Residents at home for disabled in Pembroke worry new regulations could affect them  | The Patriot Ledger

The Centers for Medicare and Medicaid Services in March published new rules related to Medicaid-funded home and community-based services, including residential programs for disabled adults. States have been given a year to submit plans showing how they will comply with the new rules, which emphasize access to community and integrated settings. >> read more

Federal rule change could be costly, change mission of autism program | The Blade

The rule states that waiver money cannot be given for programs in settings that aren’t considered ‘home and community based’ or are institutional or isolating. It has the potential to affect the nearly 6,000 facilities in Ohio that offer waiver services. These institutional settings include nursing facilities, hospitals, and intermediate care facilities. Settings in the same building or ‘adjacent to’ institutional-like settings are also not eligible for HCBS waivers. Well-intentioned as it is, the rule has left care providers across Ohio wondering what it means for their programming. >> read more 

Justice Department Releases Information on Election Day Efforts to Protect the Right to Vote and Prosecute Ballot Fraud | U.S. Department of Justice

The Justice Department has released information about its efforts to make sure that all qualified voters have the opportunity to cast their ballots and have their votes counted. Voters who need assistance voting because of a disability or illiteracy can get help from a person of their choice. The law also requires that people with disabilities are able to enter their polling places and access their voting machines. >> read more

October 2014

What you should know about autism from the point of a view of a Boca Raton man on the spectrumWPTV

“We’re not disabled, we’re differently abled.”  >> read more

A Couple Gaining Independence, and Finding a Bond NY Times

“Peter Maxmean, 35, and Lori Sousa, 48, met five years ago at a sheltered workshop in North Providence, where people with intellectual ‪#‎disabilities‬performed repetitive jobs for little pay, in isolation. But when a federal investigation turned that workshop upside down last year, among those tumbling into the daylight were two people who had fallen in love within its cinder block walls.” >> read full article

What can be done to help parents of autistic adults? | PBS

Dr. Barry and Renee Gordon really nail the issues. Please post and repost. >> read more

September 2014

More jobs, health coverage for autism | Examiner

“The U.S. Department of Labor’s Office of Disability Employment Policy today announced a total of $8,422,574 in continued funding for organizations that develop models, provide technical assistance and share best practices to improve employment opportunities for people with disabilities.”  >> read full article

Americans With Disabilities Are More Likely To Be Poor, Report Finds | Huffington Post

“Jane, a 60-year-old single mother of five who has ‪#‎autism‬ as well as a neuromuscular disability and runs a small business, told the report’s authors that the time she spends advocating for herself and her children detracts from the time she has available to work. ‘The assumption is that disabled people are incompetent, and we don’t have family obligations, [and] that we are stealing from the system,’ she said. ‘But being poor is a full-time job.'” >> read full article

Hope and frank talk on autism from Temple GrandinUT San Diego

Wearing her trademark embroidered western shirt, Temple Grandin delivered a blunt and, at times, hilarious presentation yesterday at University of San Diego. >> read more

August 2014

For Parents Of Young Black Men With Autism, Extra Fear About Police | NPR

According to the advocacy group Autism Unites, people with ‪#‎autism‬spectrum disorders are seven times more likely to interact with police over their lifetimes, compared with people without a cognitive disorder. >> read more

Obama Signs Autism Act Renewal | Disability Scoop

President Barack Obama signed a reauthorization of the nation’s primary autism legislation that includes more than a billion dollars in federal funding for the developmental disorder. >> read more

Exploring the Spectrum | Excel Magazine

“People with autism are valuable members of our communities … Like all people, they have dreams, roles to play, contributions to make. … We need to know what experiences, beyond clinical interventions, promote positive outcomes and prevent negative ones — both for people on the autism spectrum and the families and communities they are part of.” >> read more

ABLE Act Takes Major Step Forward After Bipartisan Vote of House Ways and Means Committee | Robert P. Casey, Jr. Official Wesbite

“[The ABLE Act] is eight years in the making and reflects the tireless work of individuals with disabilities, their families and advocates. As the lead sponsors of this legislation, we have focused on a common goal of providing individuals with often life-long disabilities a better way to save and plan for the future…” >> read full article

July 2014

Coping with adult children’s autism, parents may face ‘least bad’ decisions | Washington Post

“Tagrin and others say that as family members with ‪#‎autism‬ age, it becomes even more important to refuse to take no for an answer when seeking services for day programs or housing … ‘You kind of have to fight for things. If one person says no, you have to keep calling,’ she says…” >> read full article

Self-Advocates Train To Have Safe Encounters With Police | Disability Scoop

” …as part of the Autism Society of Los Angeles, Iland is trying to make sure young people like her son who are pushing for independence, don’t wind up as law enforcement statistics. >> read more

Voting Rights Act complaint alleges disabled, autistic often banned from voting | WJLA

“At a time when election officials are struggling to convince more Americans to vote, advocates for the disabled say thousands of people with ‪#‎autism‬spectrum disorder, cerebral palsy and other intellectual or developmental‪#‎disabilities‬ have been systematically denied that basic right in the nation’s largest county…” >> read more

Congress Weighing Tax-Free Disability Savings Accounts | disabilityscoop

A long-stagnant bill that would establish a new way for people with disabilities to save money without jeopardizing their government benefits is starting to make its way through Congress. >> read article

June 2014

Voting Rights Act complaint alleges disabled, autistic often banned from voting | WJLA

At a time when election officials are struggling to convince more Americans to vote, advocates for the disabled say thousands of people with autism spectrum disorder, cerebral palsy and other intellectual or developmental disabilities have been systematically denied that basic right in the nation’s largest county. >> read article 

Bill provides $1.3B for autism research | New Jersey 101.5

A new bill introduced in Washington would allocate $1.3 billion in funding for autism research and initiatives, as well as addressing the needs of individuals who are “aging out” of current programs. >> read article

Advocate shows autistic people how to have safe encounters with police | LA Times

Emily Iland spent decades advocating for her 30-year-old son, who has autism, his own apartment, a college degree and an accounting career. Now, as part of the Autism Society of Los Angeles, Iland is trying to make sure young people like him, pushing for independence, don’t wind up as law enforcement statistics. >> read more

Sheltered Workshop Eligibility May Soon Be Limited | Disability Scoop

Federal lawmakers are moving forward with a plan to require most students with disabilities to try competitive employment before they could be employed by sheltered workshops. >> read article

Autism Act Clears House | Disability Scoop

Congress is one step closer to renewing the nation’s primary autism legislation. >> read article

Family’s Complaint Prompts Insurer To Drop ‘R-Word’ | Disability Scoop

A major health insurer has agreed to stop using the term “mental retardation” after a family complained when the phrase was used to describe their daughter’s condition. >> read article

Teaching children with autism the fine art of self-advocacy | The Washington Post

Once the child has a label for her differences, there’s another important thing to talk to her about: When and how to share that information with others, and how to express her own needs. >> read article

April 2014

Time running out for parents of disabled adults to claim retroactive tax refund | The Olympian

Parents who provide home care for disabled adult children are eligible for retroactive tax refunds dating back to 2010 — but time is running out to claim some of that money. >> read article

March 2014

End the Wait Campaign | End the Wait

On behalf of the over 5,000 Kansans with Developmental Disabilities (DD) currently waiting for life sustaining DD Waiver services. Join the cause and pledge support to the End the Wait Campaign. >> watch video

February 2014

Obama to include disabled workers in minimum wage order | USA Today

President Obama’s executive order to raise the minimum wage for workers under future federal contracts includes a key provision to address concerns raised by advocates for disabled workers, according to the White House. >> read article

Autism and Disclosure: Is Virginia’s ‘Autism’ ID Card Ethical? | HuffPost Politics

This article discusses a Virginia bill that would require an optional bar code on driver’s licenses and identification cards that can be scanned to reveal if a person has autism. >> read more

Mother of autistic student fights for son’s right to education | ABC News 10

David Swanson, a severely autistic and diabetic young man has not been in school in Yuba City since February 2013. A hearing is underway this week before a judge to determine if David can go back to school. >> read more

January 2014

8 Great Resources for Information About Autism Services, Education, and Funding | About

It’s all very nice to hear that children with autism are “entitled” to certain rights, services, and funding.  But where do you find reliable information about what your REAL entitlements are, or how to tap into the services you need? >> read more

Discrimination | Emma’s Hope Book

Mom writes about her autistic daughter’s struggles with discrimination. >> read more

2011

A Social Security Lifeline: Kira’s Story | YouTube

Kira discusses her struggles with living on the limited money she receives from social security. >> watch video