Judge Denies Guardianship to for Groom-to-Be with Down Syndrome

Talk about self-direction and person-centerd planning ... powerful decision.

A Brooklyn Surrogate Court judge denied a guardianship petition sought by family members of a 29-year-old man with Down Syndrome, saying their objection to him marrying was an insufficient basis for appointing them guardians.

Surrogate Court Judge
 Margarita López Torres

"The right to have a family of one's own is not reserved only for persons with no disabilities," Surrogate Margarita López Torres said, "and the yearning for companionship, love, and intimacy is no less compelling for persons living with disabilities."

Advocates Attack Malloy Budget Cuts

HARTFORD — Groups advocating on behalf of Connecticut's developmentally disabled adults and children took to the Capitol to criticize Gov. Dannel Malloy's rescissions from more than ten days ago. One Democrat in the Connecticut House even took the governor's administration to task and backed GOP calls for a Special Session to address funding deficiencies.More than $7 million of the cuts were aimed at the Department of Developmental Services that handles adult home and day services for adults living with mental struggles.

A Father's Guilt Prompts Fight for Reform

Had the opportunity to hear Murray speak and read from his powerful book. Compelling to hear a father's perspective. What seemed like hitting the lottery when his daughter was placed in Willowbrook turned into a nightmare for Murray, as he struggled with guilt and anger, and eventually began a fight for major reform.
 
STATEN ISLAND, N.Y. -- Murray Schneps' story begins with the birth of the first of his four children, a daughter, Lara, in 1968. She is a beautiful red-head who is profoundly retarded, blind, and so physically handicapped that she does not develop the capability to sit or stand. She has difficulty swallowing and cannot speak.

In his recently published book, "I See Your Face Before Me," Schneps tells his story as a parent in turmoil over leaving his daughter at Willowbrook, whose guilt and anger sharpened his resolve to champion reform.

Lifetime Cost of Autism Tops $2 Million

U.S. and U.K. scientists have completed the most comprehensive analysis of the costs associated with supporting a child with an autism-spectrum disorder (ASD) over a lifetime and found that those whose ASD is linked with intellectual disability can accrue up to $2.4 million while those without intellectual disability require about $1.4 million in medical, nonmedical and indirect costs. And that’s on top of the average $241,000 that it takes to raise a child to age 18 in the U.S.

Customers Protest Whole Foods Firing

There are times when a snow day should just be a let-it-go day. People tend to overreact in ways that could be avoided if everyone just chilled out and waited for the plows to do their work.The folks at a Chicago Whole Foods store may be reconsidering a snow-related action that brought once-loyal customers into the snowy streets to protest an action taken against a working mom with a special-needs child. Such a scene was starkly at odds with the upscale grocer’s carefully crafted image of good deeds and high-quality products and service.

Opinion: Do We Really Need Cure for Autism?

Does autism need to be cured? I am forever reading articles, mainly on American sites, that claim they have found a 'cure' for autism. These are observed when scrolling down my Twitter feed or conducting online autism research, I mainly look for interesting news stories and new interventions, ways in which I can help my child. I use the word 'help' rather than 'cure' as this word sits uneasy with me.

New School Filling an Educational Void

One of those times we are proud to share a story about our elementary school -- Manhattan Star Academy -- for children with special needs.

Manhattan Star Academy, a privately-funded, non-profit school, hopes to bring to the Upper West side and Manhattan something that many parents of special needs children feel is lacking in the city school system: a place for their child.The Academy is part of the YAI network, a network of schools, training and health and human service agencies in New York and New Jersey that focuses on special needs children, teens and adults. Manhattan Star Academy is in its fledgling stages, with 10 children enrolled at the YAI Central Building in Chelsea. But by next year, the school for children ages 5-12 (the first school in the network above the preschool level), hopes to be open at their new Upper West side location, for 55 students eventually, right around the corner from Lincoln Center.

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.

Warehoused: Nova Scotians with Disabilities Face a Housing Crisis

From Huffington Post Canada - an in-depth look at Nova Scotia’s system to provide housing for persons with intellectual disabilities which is overburdened and bureaucratic as governments keep promising to fix it. As journalism students in the investigative workshop at the University of King’s College discovered, our most vulnerable citizens are essentially warehoused.

Penny Kitchen

A SYSTEM IN CRISIS

Nancy Walker’s partner had never seen her so upset. She had cried through the entire meeting with her son’s social worker, and would continue to cry “pretty much for the whole year. Every single day.”

This isn’t what she’d wanted. This isn’t what she’d wanted at all.

Ben James, her 19-year-old boy-becoming-man, had severe autism. He

Paul Gilllis

was in public school and had improved his communication by using picture-and-words systems and new technologies available for autistic people on iPods. He loved swimming, went bowling once a week and thrived at his recycling centre job.Walker had dreams for him.

But James could be violent. The six-foot-two, 230-pound teenager’s kicks, scratches, bites and head butts were nearly always aimed at his mother. Despite the stronghold that was his bedroom – reinforced walls, double studding, a Plexiglas window and a steel door – Walker still had to find ways of avoiding her son’s demands, and physical outbursts when they weren’t met.

Paying for Finn, a Special-Needs Child

Author Jeff Howe with son Finn.

What's wrong with this child? There are a lot of ways to answer that question.I don't mean that in an every-child-is-unique-as-a-snowflake way. I mean that my wife, Alysia, and I are pretty sure that Finn hails from some distant, unknown planet.

Radio Host Mocks Woman with Disability; Family Responds

Kellie Baker and her family being
interviewed by a local TV station. 

STRASBURG, Ohio --- The family of Kellie Baker of Strasburg hopes to raise awareness of bullying of people with disabilities after she was mocked by the host of a show on an Alliance radio station.
“My feeling is, if I can change the way one person thinks or feels, it would be phenomenal,” said Baker’s mother, Gigi Standiford. “Even better would be to change the way they react to people with disabilities.”

Replacements Anger Striking School Bus Drivers and Matrons

School bus drivers and matrons
protest.

STATEN ISLAND, N.Y. -- Momentum on the picket line grew among the striking yellow school bus drivers and matrons as they watched newly-hired replacements pick up their abandoned routes on Tuesday morning.

Between 50 and 60 buses rolled out of the Atlantic Express depot in Chelsea, according to Huguenot resident Ernie Maione, a member of Amalgamated Transit Union 118 who has been driving a special education route for more than 30 years.

A Different Approach to Therapy

Kristen Earley runs with her horse,
Star, at the North Carolina Therapeutic
Riding Center.

MEBANE, North Carolina — At age 6, Abigail Baggett wanted nothing more than to play soccer with her friends.
But battling cerebral palsy, the youngster faced major challenges, often stumbling when she tried to run up and down the field. The first time Abigail refused to go to physical therapy, her parents began searching for another outlet.

Connecticut Families Endure Long Wait for Care

Connecticut is fast running out of money for a residential program that many families with intellectually disabled children have relied on for years.  Families are concerned about where their children will live and who will take care of them as they grow older.

Word to Your Mom (or Dad)

When we hear the word communication, we most often think of speaking. This is fair and quite logical, as most of us use words to convey messages each and every day with a variety of people. We talk about our weekends and the tastes of the foods we eat and how we feel about Hurricane Sandy, Argo or the upcoming election.
But many children with special needs are often unable to effectively express even their most basic needs and desires. They do not have the words to say, " I absolutely despise broccoli," or "I'd rather watch SpongeBob," or "I need help in the bathroom."

Budget Cuts and the Meaning of Work

From The Gazette in Cedar Rapids, Iowa. Unfortunately, you can change the names and the location to almost anywhere around the country and find the same thing.

If you don’t have any direct experience with them, it can be hard to understand just how profound an effect Linn County’s recent budget cuts have had on people who rely on Mental Health and Developmental Disability services. That’s why a handful of families are speaking out, specifically about the cut to work programs.

Most of us are taught from childhood that work is an important part of becoming an adult — a source of pride and identity — and developmentally disabled adults in Linn County are no exception. Here are a few of their stories as written by family members:

21, Autistic and Having a Party

From NYTimes.com Motherlode parenting blog.

For his 21st birthday, my son received cards from friends, relatives and a favorite elementary-school teacher, yet few of these well wishes were printed with his age. In searching out my own card for him, I soon learned why. Tag lines that start, “So you’re 21?’ ” often end with instructions to go out and tie one on; as my son is on the autism spectrum, such advice would have been in dubious taste. Yet as much as I appreciated the senders’ thoughtfulness, I found myself thinking: another difference. Again.

Opinion: My Son and the City

 From NYTimes.com's Opinionater by Marie Myung-OK Lee


When my husband and I began mentioning to friends and family that we were thinking about moving from Providence, R.I., to New York City, everyone’s first question was not about what career opportunities awaited us or which borough we wanted to live in, but: “What about J?”
J, our 12-year-old son, has serious medical challenges and developmental disabilities, autism among them. He’s prone to violent tantrums that can be triggered by something as simple as catching sight of a dog 100 feet away, which makes our everyday life often messy, always unpredictable. But in Providence, we had the help of in-home aides and respite care provided by Medicaid, as well as a close-knit group of friends. Whenever we had an emergency, there were plenty of people to call. Whenever J had a meltdown, we could just jump in the car and go home. What would this scenario look like in New York?

Finding Care for a Child with Special Needs Is a Time-Consuming Process

MOUNTVILLE, Pa. -- When friends ask Michelle and Jeff Janidlo to get together for dinner or come to a party the Mountville couple turns them down. It's not that they don't want to socialize it's because the Janidlos can't leave their son at home by himself or with a sitter. Connor Janidlo 13 has severe intellectual and development delays autism and seizure and movement disorders

Autism, Parenting and Feeling Judged

I saw a woman at the gym the other day that I really wanted to avoid.
I used to see her a lot when Matthew was small. It seemed she was always there when he was bolting away from me at the grocery store, the swimming pool, the park. She watched me as I tackled Matthew before he wandered into the street, and while I tried to defuse a big bad meltdown. She was always sitting right behind us in church while Matthew flapped and tapped and giggled. Her pale blue eyes followed us everywhere and her frown was constant.