When Salary Doesn't Match Impact

A great article from The Journal News in Westchester, describing the work of our DSPs and why they deserve a living wage. However, a state-wide $15 minimum wage must be funded. If you're in the NYC metropolitan area, hope you'll join us for a rally on March 11 outside the Governor's Manhattan office, 633 Third Ave., from 11 a.m. - 1 p.m. Spread the word.

GREENBURGH, N.Y. — Tracey Cargill-Moore, 39, has worked with the developmentally disabled for a decade. Officially, she's a direct support professional, or a "DSP," as they are called. At social service organizations across the state, they serve as caretakers, helpers, teachers, coaches, cheerleaders, nurses, therapists, mentors, counselors and friends to the disabled people they work with.

It's a job with a lot of responsibility. Although they must retain state certification and receive training in a variety of areas including first aid, CPR, medication administration, abuse identification, prevention and reporting, DSPs are paid less than the average fast food worker.

Californians Protest for More Funding

LOS ANGELES -- In what they called a last desperate plea, more than 100 protesters gathered in front of state Sen. Kevin de Leon’s district office Tuesday to press him and other lawmakers to boost funding for programs for those with developmental disabilities.

Demonstrators, including those with special needs, were joined by supporters from the San Fernando Valley, Pasadena and all over East Los Angeles. The protesters lined West Sunset Boulevard holding signs that said: “Fair Funding!” and “Save our Services!”

Opinion: Students Need More Options

My wife, Liz, and I have a 5-year-old son named Sam who, along with his little brother, Pete, is our pride and joy. Sam was diagnosed with autism-spectrum disorder at age 4. The symptoms of ASD vary but are characterized by social deficits and repetitive behavior. His doctor says he is high-functioning, which means that with the right schooling, therapies, teachers and family support Sam could be “mainstreamed” into a regular classroom with his peers in the future.But getting from here to there is going to take enormous effort, and our local public school has already shown an unwillingness to help. Sam is old enough to attend kindergarten in the fall, but after reading his progress reports and listening to his therapists, Liz and I agreed he was not ready to tackle the added challenges of kindergarten. His language skills are still delayed and he has sensory and social issues that could use another year of work.

The 'Invisible Workforce' Needs More

Matthew Gross, a Direct Support Professional wrote a powerful piece for Huffington Post about the importance of the work he and other DSPs do every day across the country.  Hope folks in Washington are listening.

I'm a member of a largely invisible workforce in the health care industry. I don't wear a uniform or commute to an impressive office in an elaborate medical complex. I don't have tenure or advanced degrees or a professional suffix after my name. And yet, despite a lack of any discernible professional recognition, or public awareness to speak of, I'm entrusted every day, to deliver some of the most intimate and important services to some of our nation's most vulnerable citizens.

Preparing Special Ed Students for Jobs

JORDAN, Minn. — Each student needs to prepare for life after high school while still sitting in class before graduation day.

Every high school student needs to think about pursing a higher education or be ready to enter the workforce with necessary skills that match jobs in technical or service industries.

Special education teacher Vanessa Bigaouette teaches a Transitions class at Jordan High School that prepares juniors and seniors for life after high school. The curriculum covers subjects like planning for post-secondary education or training, employment and independent living.

Asking Children with Special Needs to Clear the Same Bar

Jackson Ellis will soon head to fourth grade. Diagnosed with autism spectrum disorder, he's been receiving publicly funded services since he was 15 months old. Jackson's mother, Rebecca Ellis, a single parent, has made education advocacy her career. She's fighting to make sure her son gets the help he needs at his Mandeville, Louisiana public school. That's always been an uphill battle. But, since the state adopted the Common Core State Standards, Ellis says, it's become even harder.

"There's always been a gap — academically, socially — between what he could do and other kids could do," she says. "When the standards changed, the gap grew into this canyon overnight."

Oregon Families Fight New Provision of Affordable Care Act

SALEM, Ore. — Deana Copeland has cared for her 22-year-old, medically fragile daughter since she was born, but she's afraid that a new provision of the Affordable Care Act could force her to place her daughter in foster care.

Deana Copeland, right, has cared for
her daughter, Andrea Hood, since
she was born.

Her daughter, Andrea Hood, suffers from cerebral palsy, spina bifida and autonomic dysreflexia, a potentially life-threatening condition, and requires around-the-clock care. Copeland is both Hood's legal guardian and paid service provider, for which she receives $1,400 a month.

"I could never expect somebody else to address her needs the way I do," said Copeland, a Cornelius resident. "In our specific situation, it is going to cost the state exponentially more to do less care for Andrea if Andrea has to be cared for in a center."

That's because a new provision of the Affordable Care Act set to go into effect Jan. 1, 2014, would largely prohibit guardians from serving as the paid caregiver of an adult child with developmental disabilities. Disability rights advocates and state officials are fighting the provision and say it could restrict family flexibility and choice, especially for single parents who serve as guardians and use the caregiving allowance to stay at home.

The Most Powerful Advocacy Tool

There are several tools that, as advocates and activists, we use to be effective in our work. Most of us tend to use what I refer to as the “nice” tools –- letter writing, meetings, action alerts and –- quite often –- policymaking, which is crafting public policy or legislation to address or resolve an issue.In fact, in the disability advocacy world, policymaking is a favorite tool, as it is considered “safe." It is used almost exclusively by the large “mainstream” disability organizations. Some even offer training on policymaking for their employees and other disability rights advocates.Advocacy and policy training are great and necessary but there is a tool in the toolbox glaring all in the face, yet the advocacy and policy types don’t want to discuss or utilize it -- it’s called direct action.

One Mom's Tips for Armchair Advocacy

Interesting article by Cathy Jameson, a Contributing Editor for Age of Autism. Great tips for anyone involved in advocacy.

We have questions.  Our Congressman should be able to us get answers.  In a perfect world, all of our question asking will have paid off and the truth revealed.  The truth, especially as how it relates to vaccines and autism, has been hard to get.  Many of us have gone round and round locally with our doctors, special education departments and state government agencies while working tirelessly to heal our children.  Yes, it’s been tiring; but, it’s time to think bigger.  It’s time to get the attention of our nation’s leaders—those people who have promised to work for us.  

With a few politicians at our disposal, especially those who attended the 2013 AutismOne Congressional Panel last weekend, keeping their attention is important now more than ever.  Before you shy away in a corner thinking you have no experience dabbling in politics, getting the attention of our government leaders isn’t as hard as it sounds.  It, just like so many things you’ve already done, is just a quick Google search away.  I’ll prove it.  

It Gets Better

Post from Susan Senator, mother of three sons, writer and activist. Her oldest son Nat, 22, was diagnosed with autism at age 3.

Riding along with Max today it struck me how happy I was. But this is typical when I’m on my bike (and with Max). Again and again, the wide open sky is my source of ecstasy. Going fast into the rushing air, or pushing up into it working so hard that my arms tingle at the summit — this is my element.
If you’ve been reading, you know this. But I mention it today because it occurred to me that I always want to be outside. I want to do as much as possible outside. I live for the hot weather, so I can be outdoors as much as possible (coffee on the porch, lunch on the porch, dinner on the porch or at an outdoor cafe). Riding, riding, riding.
Working, too. Now I leave. I am out of my house, in the world, teaching, speaking, traveling. I’ve even been involved in politics. I write controversial stuff. I’m out there, people say.

Advocacy Tips From Pa. Lawmakers

HARRISBURG, Pa. — Nancy Richey stepped to the podium with a microphone at the Capitol rotunda with the hope that the right people would hear her message.
She rallied a crowd of more than 100 sign-toting people with disabilities and their advocates and service providers. They lined the white marble steps, chanting "Keep your promise!" in protest of $168 million in proposed cuts to community mental and behavioral health services and assistance to the homeless.

Mom Demands a Voice in Daughter's Education

TAMPA -- For months, Veleria Fabiszak has pleaded with the Hillsborough County School Board to help her daughter, Chelsea.

The 20-year-old high school student has Rett syndrome, a neurological disorder that causes seizures and developmental delays.

Sometimes, Fabiszak shares a heart-wrenching story about how Chelsea's disease has stolen her ability to walk and talk, but not her desire to learn. Lately, the discussion has dissolved into a showdown between Fabiszak and district administrators.

Studies Show Community Care Is Viable

Case studies across the country have shown that residents of institutions can be successfully moved into smaller settings in the community in most states, according to a court brief filed last week on behalf of national and international academic and advocacy organizations. They include American Association of Intellectual and Developmental Disabilities and the Association of University Centers on Disabilities.

Best Buddies Leadership Conference Supporters Learn ‘yes, they can’

BLOOMINGTON, Ind. -- For most of their lives, many of the 1,300 people who were gathered in the IU Auditorium on Friday have heard the word “can’t.”

At the opening ceremony of the Best Buddies International Leadership Conference, they heard the opposite: Yes, you can.

“‘I think she can’t.’ I’ve heard people say this so many times,” said Rachel Lipke, an intellectual and developmental disabilities self–advocate. “I’ve had a lot of difficulties in my life, but I’ve made sure to turn the word ‘can’t’ into ‘can.’”

Advocates Praise Autism Therapy Pay Bill

ALBANY, N.Y. -- Trish Washburn's son Buddy, who has an autism spectrum disorder, didn't speak until he was 4 years old.

Washburn, who lives in Colonie, said she cried at night thinking about the life Buddy would have if he couldn't talk.

"I became a crazy mom and made sure he got the things he needed," Washburn said.

Her insurance company denied payment for speech therapy, so she found grants. Buddy, now 10, talks nonstop.

The state Legislature passed a bill last week that would require insurance companies to pay for therapy for autistic children. Gov. Andrew Cuomo has not signed the bill into law yet.

Promoting Jobs vs. Workshops in Ohio

COLUMBUS, Ohio -- If he had been born 50 years ago, Ian Baustian might have been institutionalized. Locked away.
No one would have discovered whether he was capable of more.
Back then, Baustian wouldn't have been a laboratory clinical assistant at Fairfield Medical Center in Lancaster, where he works alongside people who don't have disabilities - people who embrace him and his autism.
His kind of story is both triumph and tragedy, as far as advocates are concerned. As far as Ohio has come in employing developmentally disabled adults, the state has much further to go, they say.

Hundreds Protest Proposed Cuts in Arizona

PHOENIX -- They've lost child care, housing, transportation, case management, therapies for their disabled children and counseling for themselves.
They aren't optimistic that they will change the minds of Gov. Jan Brewer and Republican lawmakers, who are poised Thursday to enact even deeper budget cuts to balance a combined $1.6 billion deficit this year and next.
But they found a way to get to the state Capitol on Wednesday. An estimated 500 of the state's most vulnerable citizens and their advocates, some in wheelchairs and strollers, rallied against reductions to health care and social services.

Schools Meeting the Challenge of Educating Children on the Spectrum

COLORADO SPRINGS -- It’s mid-morning, and Teresa Wright is relaxing on her living room couch, sighing that familiar sigh mothers everywhere emit after a hectic morning getting the kids off to school.
But Wright has more on her mind than making sure the kids have their lunches and homework assignments. Three of her five sons — an 11-year-old and 9 year old twins — have autism spectrum disorder, and over the years, she and her husband, Patrick, have worked endlessly to make sure the boys’ school experiences have been productive.

Teaching People to Stand Up for Themselves

Quote of the day goes to David Swallow, a recent graduate of a program in Texas designed to help people with developmental disabilities learn advocacy and leadership skills: "People tell you you can't do anything, but I have proved them wrong every time."

FORT WORTH, Texas -- David Swallow has been called retarded all of his life.
"I hate that word," said Swallow, 54, of Fort Worth.
But instead of dwelling on negative stereotypes, he has tried to educate others, including lawmakers, about more positive alternatives. This year, he pushed for a bill that would ban the word from state statutes.
"People tell you that you can’t do anything, but I have proved them wrong every time," he said. "I have a car, I pay insurance, I drive, I’m my mother’s caregiver, and I am contributing to the community."
Swallow is among the first graduates of a new project designed to teach people with developmental and intellectual disabilities how to stand up for themselves