With Few Resources, New York State Curtails Development of Group Residences

Morethan 6,000 people in New York State are on waiting lists for group homes, and the recent economic crisis will make their waits longer.
With New York hampered by a $15.4 billion budget deficit and an uncertain fiscal future, its Office of Mental Retardation and Developmental Disabilities has canceled 84, or almost 17 percent, new group housing projects statewide. The agency operates 1,068 community-based sites serving more than 8,200 people.
The cuts come at a time when more people with developmental disabilities are outliving their parents, and advocates say the cuts could create a generation with nowhere to go.
"It is important for everyone, but especially those with developmental disabilities and their families, to know that development has and will continue, just not at the same scope and pace as before," said OMRDD spokeswoman Nicole Weinstein. "Our offices do not have all the resources it needs to fund all the new projects that have been requested."

Rise in Adults with Autism Worries Caregivers

Check out The Sacramento Bee article about how society is unprepared to meet the needs of the rising number of children with autism spectrum disorders who are becoming adults.
"We don't have the programs. We don't have the research," said Dr. Robert Hendren, director of the UC Davis M.I.N.D. Institute. "We have this very large adult population of autistics coming along, and we don't know how to deal with them. We just haven't come to terms with it."

But the futures of hundreds of thousands of autistic people in America cannot be ignored for long, said Hendren and others.

Nationally, the number of autistic children expected to need extensive adult services by 2023 is about 380,000 people, and the bill for caring for them will be in the billions of dollars.

Care providers are just beginning to grapple with how to deal with the surge, even as governments slash social services to cope with budget deficits.

Read David Kirby's take on this on Huffington Post

A Personal, Coordinated Approach to Care

What a wonderful column by Jane Brody of The New York Times, who totally grasps and explains the medical model concept in health care. I must confess, I've heard people talk about the medical home, in reference to our own health care practice, Premier HealthCare, a medical practice providing coordinated care with doctors and specialists who are trained to treat people with developmental disabilities.

To the Odom family of Durham, N.C., Dr. Gloria M. Trujillo is a savior. Johnny Odom, at 57, has congestive heart failure, diabetes, kidney failure, high blood pressure, gout, high cholesterol and blindness in one eye. His daughter, Tonia, 35, has rheumatoid arthritis, and her 10-year-old son has asthma, a seizure disorder, high blood pressure, prediabetes and sleep apnea.
Dr. Trujillo, a primary care physician at the Family Medicine Center at Duke University, takes care of them all, coordinating the care they receive from various specialists via electronic records and e-mail. Ms. Odom uses the clinic’s online health portal to get the family’s medical information, make appointments and check the lab results Dr. Trujillo sends her.
At the same time, the extraordinary care the family receives, which is financed by Medicare and Medicaid, saves money by preventing medical complications and keeping the Odoms out of the hospital.
The Duke clinic represents a promising approach to delivering better health care: the so-called medical home.

N.J. Lawmakers Clear Expansion of Coverage for Autism, Developmental Disability Therapies

This is another good sign and bravo to more lawmakers to trying to provide financial relief to families. I'd love to hear your thoughts on the $36,000 cap.

TRENTON -- New Jerseyans with autism and other developmental disabilities would get up to $36,000 in certain treatments covered each year, under a bill that cleared the Legislature Thursday.
Thirteen states have passed such a law to cover behavioral, occupational, physical, speech and other therapies. Elsewhere, insurers have denied the treatments because they were not considered restorative.
New Jersey would cap the coverage at $36,000 for 2011, and adjust the figure for inflation each year.
The Senate and Assembly have approved the bill. To become law, the bill must be signed by Gov. Jon Corzine.

Gene Linked to Causes of Autism

More research that may some day help us understand the cause of autism. This just moved from BBC.

Abnormalities in a gene important for learning and memory have been identified as a cause of autism, according to medical researchers in Scottland. The University of Aberdeen findings could hold the key to the future development of new treatments.
Using state-of-the-art genetic mapping techniques, researchers went on to discover that the re-arrangement had disrupted the EIF4E gene. The team then looked in more detail at the make-up of EIF4E in 120 other families with autism.
Dr Zosia Miedzybrodka, reader in medical genetics, said: "Our discovery is particularly important because several genetic signalling pathways, already known to cause autism, are channelled through this gene."

Leading Expert: Israel Lags Behind U.S. in Attitudes on the Disabled

OK, I don't usually post articles from abroad, but since this one involves Dr. Joel M. Levy, Co-Chief Executive Officer of YAI/National Institute for People with Disabilities who at the end of the month is retiring after 40 years with our organization, I thought this seemed appropriate.

Israel lags some 15 years behind the US in its public attitudes, awareness and treatment of people with mental disabilities and intellectual challenges, according to Prof. Arie Rimmerman, a leading local expert from the University of Haifa's School of Social Work.
Rimmerman was one of thousands of academics and professionals who gathered Monday in Tel Aviv at a Welfare and Social Services Ministry-sponsored conference examining the place of the mentally disabled in society.
It's all about interaction and contact, visiting US expert and researcher Dr. Joel M. Levy, co-CEO of the YAI/National Institute for People with Disabilities (YAI/NIPD), told the Post in an interview before taking the podium as the conference's guest speaker.
"Many people have had little direct contact or only limited interaction with people with disabilities," observed Levy, who was recently awarded the Burton Blatt Institute Lifetime Achievement Award in the US for his more than four decades of working with the disabled.
"Research shows that the more contact the public has with those with disabilities, the more accepting they become and go on to formulate much more positive attitudes," he said.

University of Illinois-Chicago Study Hopes to Shed Light on Autism, "Insistence on Sameness"

Hoping to solve a piece of the autism puzzle, a team of researchers at the University of Illinois at Chicago is looking at the relationship between the brain chemical serotonin and the trait known in the field as "insistence on sameness."
With the help of a five-year, $9.6 million federal grant, the team is using a combination of genetics, medication and brain scans to explore possible mechanisms behind this craving for routine.
There's no single pattern to autism spectrum disorders, which affect perhaps 1 in 150 children. Some with autism repeat phrases over and over. Some barely interact with anyone. Others are outgoing, but their lack of social skills can sabotage their efforts to make friends. Up to a quarter have insistence on sameness, said geneticist Ed Cook, director of autism and genetics in UIC's psychiatry department.
The differences make autism a challenging condition to study and to treat.
"Autism is too big as a whole to attack," said John Sweeney, director of UIC's Center for Cognitive Medicine and the group's brain imaging specialist. "We have to go through the brain bit by bit to find out what's working and what's not. Get the bricks sorted out, and then build the house."

Special Education Activists Hail Supreme Court Ruling in Forest Grove School District vs. T.A.

A victory for any parent that has had to fight for tuition reimbursement from their local school district to provide a suitable education for their child with special needs. Parents have described the struggle to me over the years, not to mention the financial burden of hiring an attorney. Check this New York Daily News story. Also providing links from other outlets below.

Special-education advocates hailed a Supreme Court decision Monday that makes it easier for parents of students with disabilities to get reimbursed for private school tuition.
"This decision is a good thing," said Kim Sweet, executive director of Advocates for Children of New York. "It preserves the right to a free, appropriate public education for kids with disabilities, whether or not their school district is able to offer them an appropriate program."
The court ruled 6-3 that parents who send their special-needs child to private school cannot categorically be barred from taxpayer-funded reimbursements because they didn't first send their child to a public program.

From the LA Times

From National Public Radio

From The Oregonian (home of T.A., the student with special needs)

Autistic Students Find 'A Place of Their Own' Through Private School in New Jersey

Check out the Newark Star-Ledger's series on how families united to form a private school for their children on the autism spectrum. During these lean times for the newspaper industry, it's heartening to see a paper devote resources to in-depth local jouralism.

From the day when her twin boys were 3 and a pediatrician broke the news that they were severely autistic, Laurie Duddy has set out on a life-changing crusade to find the best educational opportunities for her sons. Along the way, she would meet other parents like her -- regular folks who were frustrated with offerings in public schools and unwilling to take a number on a waiting list at one of the few private, special education schools catering to severely autistic children.
For the past three years, The Star-Ledger has followed Duddy, her boys and the people who came together to create the Garden Academy. Garden Academy is a story of struggle on two fronts. Starting from nothing, parents and teachers set out to create a specialized place that offered autistic children the hope of someday joining mainstream society. All the while they navigated a tortuous state approval process that kept the fate of the school hanging in the balance for three years.

"A Place of Their Own" is a four-part Star-Ledger series about Garden Academy, a private, special-education school in Essex County for severely autistic students.

The fate of Garden Academy may also be a window to the future. Though New Jersey's autism rate is the highest in the nation (and growing) state officials are taking an increasingly hardline on schools that are as expensive as they are specialized.
Their solution would be to start their own school.

Court Says Parents of Special-Education Students Can Seek Reimbursement

In a decision that could cost school districts millions of dollars, the United States Supreme Court ruled on Monday that parents of special-education students may seek government reimbursement for private school tuition, even if they have never received special-education services in public school.
The case before the court involved a struggling Oregon high school student, identified in court documents only as T.A., whose parents removed him from public school in the Forest Grove district part way though his junior year, and enrolled him in a $5,200-a-month residential school.

Illinois Budget Woes Threaten Programs for People with Developmental Disabilities

Just about every state across the country is facing a similar situation. Now more than ever, people with developmental disabilities, their families, friends, service providers and supporters need to advocate to esnure that these critical services remain intact.

Bravo to the Chicago Tribune for taking the time to cover this important story. More agencies need to be contacting the media with similar stories so people realize how budget cuts are going to impact people in their community.

CHICAGO -- The brain seizures that strike Joan Nowak's daughter without warning once made it impossible for her to secure a job or have any semblance of a social life. But for the last 11 years, Lisa Nowak, now 33, has enjoyed both at a Tinley Park-based Southwest Community Services, which provides case management and work programs for adults with developmental disabilities. Her situation, however, is tenuous after Southwest Community Services and other agencies that serve people with developmental disabilities in the south suburbs learned the state could slash funding by as much as 50 percent if Illinois lawmakers do not enact an income tax increase to plug a multibillion-dollar budget gap."My daughter asked, 'Where will I go next month?' and I had to tell her I didn't have an answer," Nowak said.

Victory for Children with Autism in Michigan

Blue Cross has settled a lawsuit brought by parents of children with autism, reimbursing them for the costs of therapy they had to pay out of their own pockets.
Hopefully, this will become a landmark settlement, providing relief to thousands of families who are paying for services which currently are not covered by their insurance.
The suit, filed in Detroit, alleged that Blue Cross refused to pay for Applied Behavioral Analysis (ABA) therapy for autistic children on the grounds that it was “experimental.”
Blue Cross policies exclude experimental therapies for a variety of conditions. The plaintiffs in the current suit, Johns v. Blue Cross Blue Shield of Michigan, argued that characterizing ABA as experimental was arbitrary, capricious, and possibly even illegal.
John Conway and Gerard Mantese, attorneys for the plaintiffs, said in a statement that ABA is "supported by science and is not 'experimental.'" The therapy is used to help autistic children develop the deficient verbal and social skills that are hallmarks of the disease.
In the settlement, Blue Cross agreed to reimburse the families of more than 100 autistic children who paid for their own behavioral therapy over the past six years. Included in the settlement are families covered by a Blue Cross policy who never actually submitted a claim.