Friday, July 31, 2009

Spirited Woman Battles Illness

A wonderful column from Bob Baird the Journal News about a woman we serve through our Rockland County Association for the Learning Disabled, a member of the YAI/NIPD Network. Her battle with advanced colon cancer and the staff's efforts to make sure she remains active and productive are inspiring.

Geraldine DePaola, who has spent most of her life in Letchworth Village and community residences, has turned a new hobby into a small business while battling advanced colon cancer.
It's only a few months ago that DePaola started spending hours at the table where she and five other women, all in their 50s or 60s, have their meals.
Recovering from surgery, she needed something to pass the hours.
"I used to play cards all the time," she says, adding that her game of choice was War.
But once she started stringing brightly colored plastic beads onto lanyards, she put away the cards for good. Soon, she was adding hooks, creating colorful necklaces and bracelets - first for the other women who live at her group home in Hillcrest, operated by the Rockland County Association for the Learning Disabled, and more recently for a wider client base.

Where Campers with Autism Fit Right In

ALBUQUERQUE, N.M. -- Most people have had a time in their life when they felt like they didn't belong. We've all felt awkward in a social setting, and most of the time, those moments pass. But for children with autism, those awkward moments happen every day and those days can stretch to a lifetime. It's not that children with autism don't want friends or don't want to play like other children, it's that they were born without the tools to do so.
But for the week at Camp Rising Sun, the campers get a chance for an ordinary experience, just like any other kid.
"For a week, we make sure these kids don't feel like outsiders," said Laura White, the camp's founder and director.

What Is the Real Picture of Autism?

A few weeks back Lisa Belkin, a wonderful writer, had a piece on a New York Times blog about the recent study addressing the stress parents of children with autism experience. Well, this article has generated much attention and created some interesting comments.

Here is the original column
The University of Washington released a study earlier this month concluding that being the mother of a child with autism is more stressful than being the mother of a child with other kinds of developmental disabilities. One reader’s first reaction to this news was “I could have told you that,” because her son, who is five, has Asperger’s syndrome, and his condition rules much of her life.
Then she read the report, and became angry. Its description of life with a child who has autism was sanitized and simplified, she thought. In part that’s because the words that exist in the English language fall short in evoking what she calls “the nightmare.”

Here is a response written by Lisa Jo Rudy, of, the mother of a teen on the spectrum.

Be sure to scroll down and check out the comments.

Thursday, July 30, 2009

Columnist Finds Perfect Job for Sarah Palin

Washington Post columnist Tim Shriver has generated quite the buzz recently:

Amid all the babble about Sarah Palin's recent resignation as Alaska's governor and amid all the speculation about her potential presidential bid, few have noted a new job for which she is eminently qualified: civil rights leader for people with intellectual disabilities.
The current fuss about Palin adds up to nothing more than posturing, spinning and playground name-calling. It's what makes politics distasteful to so many. If I were her, I'd ignore all of it and forge ahead in a new direction, one where she could make a real difference.

Utah Researchers Develop Genetic Map for Down Syndrome

Researchers at the University of Utah have developed a high-resolution genetic map that outlines the development of diseases often associated with Down syndrome.
Down syndrome individuals typically face a host of problems such as intellectual disabilities, heart defects and Alzheimer's disease. The map, produced by researchers at the U. Brain Institute and colleagues at Yale University, may help direct future studies and clinical treatments for a wide range of birth defects related to the disability.

Easing the Way Back to School for Students with Special Needs

Transitioning from summer back to school isn't particularly fun for anyone. Here are some tips on easing that transition for arents of children with special needs:

Going back to school can be especially stressful for students with special needs and their families. In this edition of expert corner, Dr. Scott Barkin and Gina Maranga of the Block Institute in Brooklyn, NY discuss strategies to ease the transition from summertime to school time.
Prepare early for changes
Preparation is often the key to easing transitions for students with special needs. The transition after the summer break can be wrought with emotions – sadness, anticipation, excitement and anxiety about a new school year, and for some, fear of the unknown.
Adjust to changes and create routines
Going back to school also brings with it changes to your child’s daily routine – earlier bedtimes, earlier mornings, and structured days – all of which may have been relaxed during the summer break.

Children with Special Needs to Get a Kick Out of Soccer Camp

FRANKLIN, Mass. -- As part of their capstone projects for the Benjamin Franklin Charter School, two local girls will host the Summer Challenger Soccer Camp, a free youth soccer camp for children with special needs.
Eighth-graders Alexa Frongillo and Alexis Katinas, both of Franklin, are pooling their efforts to complete the projects and work for a good cause. The girls saw the capstone project, a community service activity required for graduation, as a chance to use their passion to help do some good in the community.
"We're both soccer players, so we knew this would be something we were both interested in," Katinas said. "We decided to make it as a community service project because we get to work with children with special needs and they don't have many opportunities like this."

Tuesday, July 28, 2009

Combating Autism Act Fails to Live Up to Name

Interesting opinion piece by Katie Wright, a contributing editor to the Age of Autism. What are your thoughts?

This is an open letter to all the parents, families, teachers, therapists and others who worked so hard getting the Combating Autism Act (CAA) bill passed. Thousands of you called, e-mailed and wrote to your representatives. Dozens of families traveled to DC to meet with their Congresspersons and Senators and personally explain why autism research and services desperately need more funding. Some of you picketed the offices of non-supporters, my parents traveled to DC a dozen times and used every connection they had to make our families heard. It required Herculean efforts to pass a “single disease” bill but our community was relentless and determined.
Today the Interagency Autism Coordinating Committee (IACC) is responsible for disbursing the millions of dollars in CAA funds. Almost no one who worked for the passage of the CAA was appointed to the committee. IACC is packed with bureaucrats who seem to have a very limited understanding of autism as a disease and autism science.

Massachusetts Advocates Seek More Coverage for Disabilities

As advocates are scrambling to ensure their cause is included in bills to widen insurance coverage in Massachusetts, it's nice to hear the voice of reason from state Sen. Karen Spilka, who happens to have a sister with Down syndrome. By providing services to children with delays now, the likelihood is they will require fewer services later in life.

Massachusetts legislators this year have filed a flurry of bills - more than 70 in all - that, if passed, would substantially expand the medical services insurers are required to cover for patients but also potentially raise health care costs.
Some legislators and insurers believe that patient advocates are racing to get their health concerns covered by law before the state’s system for paying doctors and hospitals is overhauled. A commission recommended earlier this month that the state dramatically change how providers are paid, and legislators plan to hold hearings on the issue in September.
Consider the Robies of Natick, whose 5-year-old daughter, Jordan, was born with a developmental delay that has hampered her progress in learning to walk, talk, and perform dozens of other routine activities.
One of the dozens of proposed health-related laws pending in the Legislature would make Massachusetts the third state in the nation to require insurers to cover therapies for children like Jordan, who are born with a mental or physical disability, in the same way they provide rehabilitative services to youngsters who are impaired by an illness or injury. Insurers typically pay for fewer therapy sessions for developmentally delayed children.
“If we can deliver services to children born with developmental delays and increase their functioning, we are making them more self-sufficient,’’ said Senator Karen Spilka, a Framingham Democrat. “I am not saying they won’t need any services later, but this will decrease the need for them getting government services later in life.’’

Monday, July 27, 2009

Triathlete with Autism Competes in NYC Triathlon

Tremendous story about a teen with autism from Ocala, Fla., who competed in Sunday's Triathlon in New York City.

NEW YORK, N.Y. -- When the starting gun sounded, Ocala's Robbie Phillips was alongside his father, Bob, and 3,400 other top-notch athletes at the ninth annual Nautica New York City Triathlon.
Making it to this premiere sporting event, which featured competitors from all 50 states and 20 nations, was a major feat in itself for any athlete. For 18-year-old Robbie, who has autism, it has been a special journey.

Mayo Clinic Study Questions Link Between Autism and Stomach Problems

A new study casts doubt on a commonly held but controversial belief that children with autism have more gut problems than their peers.
The Mayo Clinic study, published Monday in the journal Pediatrics, found children on the autism spectrum in the study were more likely than their nonautistic counterparts to be picky eaters or constipated. But the researchers did not find a significant difference between the two groups when it came to diarrhea, abdominal discomfort, bloating, reflux or vomiting.
"We did not find a difference in gastrointestinal symptoms in total," said Dr. Samar Ibrahim, lead study author and a Mayo Clinic pediatric gastroenterology fellow.
For years, parents, physicians and researchers have wondered whether people with autism suffered from more digestive problems than the rest of the population.

Good Social Programs Make Economic Sense

A Sacramento Bee opinion piece by Dave Perez, the father of a son with multiple disabilities.

Like any child, our son, Sam, brings our family lots of joy, but more than his share of hard work. How many 17-year-old boys require 24-hour care, are tube-fed and incontinent?

All expecting parents know there is no guarantee of a healthy child. When disability occurs, we need to be responsible, but what happens if the parents of a child can't meet all of their child's needs, or if they become disabled themselves? These scenarios occur much more often then you might think.

There are no easy answers. Already this year, Gov. Arnold Schwarzenegger and the Legislature cut $100 million from programs that serve Californians with cerebral palsy, autism and other developmental disabilities.

That $100 million cut followed a 10 percent hit on programs that help people with disabilities find jobs and a 3 percent cut on most of their other programs. Now, they are cutting another $234 million, with most of that coming from programs that serve disabled people in their communities.

Disabilities Agency Culls Backlog of People Seeking Aid

A Maryland state agency is sorting through its waiting list of 19,000 developmentally disabled people to see if they still need services, a step that highlights a decades-old backlog of families seeking scarce state funding.
Starting with those in the highest need category, the Developmental Disabilities Administration is working its way through the list, a process that is estimated to take six months.
The clogged list has kept families from help for more than two decades, said Cristine Marchand, executive director of The Arc of Maryland.

Yankees Surprise Mailroom Workers at Manhattan Law Firm

This has been one of the best kept secrets at YAI/National Institute for People with Disabilities for the last couple of months! The New York Yankees, as part of their HOPE Week, were going to recognize two individuals with developmental disabilities who receive job training and coaching from our organization. The workers had absolutely no clue that Friday was going to be anything but a normal day at the office. A major thank you to the Yankees and everyone for making this story come to life.

NEW YORK -- Ranjit Seal tried so hard to keep his composure when Johnny Damon, Nick Swisher and CC Sabathia strutted into his office on Friday afternoon. On the inside, he was in utter disbelief, but he didn't want his heroes to know that.
So he went about his business, along with his partner, Melvin Williams. Together, they led the Yankees' players around the Manhattan law firm of Ahmuty, Demers and McManus, demonstrating what they do every day -- sort and deliver mail to the attorneys.
Then Seal received such good news, he could no longer contain himself. He was told that he and Williams were going to be guests of honor at the Yankees' game that night against the A's at Yankee Stadium and would have the opportunity to deliver mail to the rest of the players in the clubhouse beforehand.
Seal let out a loud yelp and tried to find a chair to slump into, lest he faint from the excitement. Suddenly, it all made sense. His mother had been acting strangely, telling him he couldn't go to the movies that night without really giving him a good reason.
This was a good reason.
"I must be dreaming," he shouted. Williams looked on and grinned, expressing his excitement in his own way.

Tuesday, July 21, 2009

Project May Help Children with Autism Find their 'Voice'

Great work coming out of the University of Kansas (yes, even Jayhawks do some good things -- go Mizzou) to help children on he spectrum develop communications skills.

LAWRENCE, Kan. -- Eleven-year-old Tait Holter pushes a button that has a picture of a heart on a hand-held device. It has the word “love” underneath.
“I love you,” a voice says when pushed.
The device serves as Tait’s voice, and he uses it to tell his parents, Mark and Maria Holter, that he loves them.
The technology helps the Lawrence boy who has autism, a complex developmental disability that causes problems with social interaction and communication.

Monday, July 20, 2009

Bicycle Camp Clears Hurdle for Special Needs Children

Great story from Detroit, for a change, on a program that is helping to monitor the health of children with special needs. Check it out.

DETROIT -- Over the years, Noah Harrington tried to learn how to ride a bike. It was like learning a foreign language.
Noah's mild autism led to numerous frustrations, failures and fears. He was 10. His bike still had training wheels.
But thanks to a bike camp that is part of research showing improved health of special needs children who master a two-wheel bike, Noah was pedaling around a parking lot week with a big smile on his face.
"I don't need training wheels any more," said Noah, of Dundee. "I am a bicycler now."
Noah and 39 other children in Ann Arbor last week participated in a study at the University of Michigan that recently landed a $595,000 grant from the U.S. Department of Education. In its third year, the study measures the activity level of children with autism and Down syndrome when they learn how to ride a bike during a five-day bike camp.
Because of their limitations, only 10 percent of children with Down syndrome and 18 percent of children with autism can ride a bike, said Dale Ulrich, director of U-M's Center for Physical Activity & Health in Pediatric Disabilities.
But after the camp, most who attend can ride a bike, and the study is finding the children are more likely to stay physically active, leading to many health benefits

Hispanic Families Form Autism Support Group

KENNEWICK, Wash. -- Lizette Romero stood quietly by her mother's side pulling crayons out of their box to color with.
After pausing a couple of times to stare blankly at different spots on the wall, the 6-year-old continued to focus on the paper, almost making a rainbow if not for the large gaps between the swatches of color.
"My biggest frustration is that she still doesn't talk," said her mother, Magdalena, in Spanish.
Lizette was diagnosed with autism when she was 18 months old and the family was living in Fontana, Calif. Upon hearing of her daughter's diagnosis, Romero said she was lost.
"I had never even heard the word before that day."
"The cultural barrier is incredible," said Terry Buck, a case manager for the Division of Developmental Disabilities in the Tri-Cities.
He has hundreds of clients from various ethnic backgrounds, an estimated 60-80 of which are Hispanic.
Now, the Hispanic Autism Support Group is trying to help these families.

Children with Seizure-Related Developmental Disabilities Respond to Behavioral Treatment, Study Finds

Brookville, N.Y. – Infants who experience seizures may go on to have difficulty understanding the meaning of sounds – but the condition can be eased through persistent positive reinforcement by parents and caregivers, a professor of psychology at the C.W. Post Campus of Long Island University reports.

“The problem is not that the subjects can’t hear; it is that they have trouble learning what the sounds mean,” said John C. Neill, Ph.D. “The good news is that we also found that it was possible to teach subjects to learn how to respond correctly to sounds with the right behavioral procedures.”

Wednesday, July 15, 2009

Autism Spectrum Disorders: Early Intervention Can Improve Outcomes

A clinical Watch item form the Journal of the American Acadmy of Physicians Assistants.
Access to community resources is critical for effective management of autism spectrum disorders. These resources may include a pediatrician who subspecializes in developmental disorders, occupational and physical therapy, and coordination of behavioral therapy with educationand school-based systems. Early intensive therapy can help children reach their full potential. Educational interventions and optimal medical care are important to their long-term care management

Caught In the Middle of the Cuts

CHICAGO -- The State of Illinois has no budget for social services.
Illinois Gov. Pat Quinn and the General Assembly have been wrangling over how to balance a budget with an estimated $9 billion deficit. People with disabilities in Illinois have been caught in the middle. The proposed budget cuts the Department of Human Services by 50 percent. Quinn vetoed this portion of the budget, leaving no budget for the department. The Department of Human Services provides services related to mental health, child care, people with disabilities, seniors, addiction problems, and housing, among other services.
Of those who rely on these services, more than 200,000 are people with developmental disabilities. Nonprofit agencies that provide serves for people with disabilities--such as therapy, respite care and employment support--are being forced to cut services or shut their doors. The full impact of the budget crisis is not yet known, as agencies are scrambling to continue services with no promise of future payments or grants from the state.

The Stress of Autism

Tara Parker-Pope of The New York Times interviews Annette Estes, Associate Director at the University of Washington Autism Center and the center's recent study about how parents of children with autism spectrum disorders experience more and a different type of stress than parents of children with other developmental disabilities. Be sure to check out the comments on The Times' page, and share yours with us.

Monday, July 13, 2009

Study Links Autism to Autoimmune Diseases in Immediate Family

In a study of children born in Denmark from 1993 to 2004, doctors found that many children with autism or related disorders also had a family history of autoimmune diseases. Autoimmune diseases, such as type 1 diabetes and rheumatoid arthritis, develop when antibodies that normally fight infectious organisms instead attack the body itself. The study was published online this month in Pediatrics.
In the study, doctors examined patterns of disease among children, mothers, fathers and siblings.
For the first time, researchers found an increased risk of autism spectrum disorders in children whose mothers have celiac disease, a digestive condition in which people cannot tolerate gluten, a protein found in wheat, rye and barley.
The study also confirms the results of many earlier papers, says author Hjördis Atladottir of Denmark's University of Aarhus. For example, doctors found an increased risk of autism in children with a family history of type 1 diabetes and an increased risk of autism spectrum disorders in children whose mothers have rheumatoid arthritis.
People with autoimmune diseases shouldn't be alarmed, says author Hjördis Atladottir of Denmark's University of Aarhus. The vast majority of people with these conditions do not have children with autism, he says. In the study, only 3,325 of the more than 689,196 children studied were diagnosed with autism spectrum disorders.

Friday, July 10, 2009

YAI/NIPD Network Featured on "The View"

Did you happen to catch ABC-TV's The View Friday morning? If not, check out Dr. Philip H. Levy, CEO and President, of the YAI/National Institute for People with Disabilities Network (which brings you this blog), talks about the importance of early intervention for children with special needs.

A Special Teacher Speaks Up for Students with Disabilities and Their Families

SALT LAKE CITY, Utah -- When Murray High School teacher and baseball coach Jake Shewmake received a $1,000 award for being named an outstanding teacher, he didn't consider spending the money on himself.
Instead, Shewmake used the Wal-Mart award money to foster relationships between Murray High School baseball players and the students with disabilities he works with daily as a special-education teacher.
Shewmake organized joint trips to Spring Mobile Field to watch the Salt Lake Bees play. The groups of students also went out to dinner or bowling.
The coach's efforts to bring together children from different backgrounds haven't gone unnoticed.
It's one reason Shewmake was honored Wednesday evening during a Salt Lake Bees game where special-needs families were welcomed as part of a disability-awareness night.

Thursday, July 9, 2009

Mothers of Children with Autism Have Higher Parental Stress

Researchers at the University of Washington's Autism Center asked mothers about their experiences and found that moms of children with autism had higher levels of parenting-related stress and psychological distress than mothers of children with developmental delay. Children's problem behavior was associated with increases in both parenting-related stress and distress in both groups, but this relationship was stronger in mothers of children with autism.
She noted that problem behavior needs to be a crucial target in treating children with autism and developmental delay.
"We need to focus on it because it appears to have the potential to disrupt the family, parenting and the child. While problem behavior is not a core element of autism, it might rise to the top of the issues that have to be dealt with first in a clinical setting," said Annette Estes, lead author of a new study and associate director of the UW Autism Center.
"Help in what we call family adaptive functioning is what we need to figure out in these cases. How to help families is important because high levels of stress and psychological distress can interfere with early identification of autism and interventions which are delivered by parents. There's another good reason to do this: Parents who feel supported can better support their children."

Artists' Abilities Outshine Disabilities

Check out this great story from the Richmond News in Canada (yes, I'm going outside the U.S. again) about how art is helping people with developmental disabilities. Hopefully society will some day recognize their talents and abilities and see beyond the disability.

The painting of a smiling violinist haloed by a shimmering green sun is compelling.
What is even more gripping is the fact that it was created by a 49-year-old man who never held a paintbrush until two years ago. Oh yes, Enrico Magsago also uses a wheelchair and has cerebral palsy.

Wednesday, July 8, 2009

Open for Business and Training

What a great volunteer opportunity for people with developmental disabilities. Unfortunately, so many more individuals who receive employment services across the country are out of work and there aren't enough jobs or volunteer opportunities. Hopefully this model - which helps people throughout the county who are experiencing tough economic times - will survive.

The Arc of Montgomery County (Maryland) Thrift Store held its official grand opening last week, It's the organization's first thrift store in the county.
In addition to providing valuable job skills for people with developmental disabilities, the proceeds that come from the sale of donated clothes, small furniture and house-wares benefit the Arc, among the largest community-based organizations for people with intellectual and developmental disabilities.
The proceeds mostly benefit Arc's vocational program, which trains people with disabilities in practical jobs such as lawn care and secretarial duties, said Kevin Trostle, the assistant director of business and contract services for the Arc of Montgomery County.
Not only are people gaining job skills, but they also are benefiting from the interaction the thrift store provides with the rest of the world,.

Tuesday, July 7, 2009

Applied Behavior Analysis: Educational or Medical?

Thought I'd share an interesting blog item from Lisa Jo Rudy on about applied behavior analysis. With states across the country trying to ensure that such treatments are covered by medical insurance, thought this was a rather timely item. (Lisa and I also realized earlier this year that we attended the same day camp as children - small world!)

Missouri Couple Opens Their Home to Children with Special Needs

ST. JOSEPH, Mo. -- Although Arthur and Juanita Lonjers have two biological children of their own, both of whom have careers and marriages of their own, they progressively made the decision during the past seven years to bring special-needs children into their family.

Study Pinpoints Differences in Way Children with Autism Learn

In a new study, published in the journal Nature Neuroscience, scientists have examined how children with autism move as they learn about a new tool. What researchers have found is that children on the spectrum seem to rely more on their own internal sense of body position rather than visual information as other children do. The scientists have also found that the more a child does this, the greater is the child’s impairment in certain social and motor skills.

Monday, July 6, 2009

The Importance of Arts and Crafts for Special Needs Children

From AJ Tyne of the Raleigh Parenting & Autism Examiner. AJ is the mother of a 10-year old with autism who is mostly non-vierbal. She writes regularly about raising a child with autism - the emotional issues, resources, support and tips for managing challenging behaviors.

Arts and crafts projects, as well as music, and the natural world should be taught regularly to all children, but are especially important for special needs children.
With parents so busy these days, and many schools cutting costs, it's easy for the importance of teaching our children arts and crafts to be lost along the way.
Many special needs children, if not all, need extra sensory stimulation. They can't gather information from their environment, or from their bodies interacting in their environment, the way that typical children can. This can be the result of physical disabilities or developmental disabilities. Adding more sensory input helps to calm these children, as well as helping them to explore the world around them.
Older children are often isolated from activities that could help them.
Often it seems teachers and parents concentrate on arts, crafts, and related sensory activities in the early years, but after about age 4 or 5, they tend to leave this method of teaching and exploration behind. It's important to continue this type of learning experience for many reasons.

Thursday, July 2, 2009

Students with Autism Get Joyful Launch

Editor's note: Claudia Wallis, a former Time editor at large, completed a yearlong Spencer Fellowship at Columbia's Graduate School of Journalism in which her reporting focused on the treatment and education of children with autism. To see more of her autism project, visit her Web site.

NEW YORK (CNN) -- All parents have hopes and dreams for their children. Parents of kids with serious disabilities are no different. But in their moments of wildest imagination, the parents of Vicki Martinez, Chase Ferguson and Travis Cardona could not have envisioned high school graduation -- certainly not in the dark days when they first learned their children had autism.
But last month, in a spacious high school auditorium in the Bronx, Vicki, Chase and Travis marched down the aisle to "Pomp and Circumstance," resplendent in their caps and gowns, along with 15 classmates at P.S. 176X, a New York City public school with 560 students ranging in age from 3 to 21, all of whom have autism.
"When I came here, I couldn't talk. I talked gibberish," the now-voluble Vicki recalls. "I didn't do my class work; I'd go like this," and she proceeds to flap her hands -- a common symptom of autism known as stereotypy or, self-stimulation.
Nationally, there is much debate over how best to educate the nation's rapidly growing and diverse population of youngsters with autism, the prevalence of which has increased tenfold over the past 25 years. The quality of services offered by public schools varies enormously from place to place. Some parents relocate to school districts that offer good autism services. Some persuade or even sue their district to pay for private school placement, which can cost $70,000 a year or more.

California Group Claims Autism Treatment Is Denied Illegally

California regulators are violating mental health and other laws by allowing health insurers to deny effective treatment for children with autism, consumer advocates contend.
In a lawsuit, Consumer Watchdog, a Santa Monica group that monitors insurance practices, is asking a judge to order the Department of Managed Health Care to require insurers to provide autistic members with the services their physicians have ordered.
The battle over autism treatment is at least a decade old. In 1999, in response to widespread outrage over insurers' refusal to cover such needs, the state Legislature adopted the Mental Health Parity Act.
The law requires insurers to cover care for mental and behavioral problems at the same level as they do for physical illnesses.

Medicaid Cuts Slash Services for Coloradans with Developmental Disabilities

Yet more service cuts are undoubtedly going to have a negative impact on individuals with developmental disabilities.

Cuts to Medicaid benefits for hundreds of people with developmental disabilities in Colorado have gone into effect, a move that will be devastating, caretakers and advocates say.
The change was set into motion by the Centers for Medicaid and Medicare Services, which required that Colorado's reimbursement system be standardized after an audit found discrepancies in how Medicaid dollars were being spent.
Thirty-one-year-old Colorado Springs resident Aimee Starling, whose brain was damaged after she got stuck in her mother's birth canal and was deprived of oxygen, is among those losing a hefty chunk of financial support.
Aimee's total annual payment of $29,500 is being sliced to $13,267, her mother, Kathy Starling, said. The cut eliminates many quality-of-life services Aimee has had for years, including reading tutoring, a YMCA pass, classes at Bemis School of Art and one-on-one assistance with certain activities. Starling's one-week respite care allowance of $1,331 is gone. Her daughter's dental supplement falls from $2,000 a year to $200, and a vision plan drops from $1,000 to $340.

People with Developmental Disabilities: Aren't 'They' But You and Me

Jill Keppeler's poignant column from The Tonawanda News in upstate New York. As a young reporter, she recalls covering resientance to a group home. Now, the mother of a child with Down syndrome, she stands by her column from 10 years ago.

’Because it could happen to you. It could happen to me ... and all of those we love.’
I wrote those words a long 10 years ago, a young reporter in my first full-time journalism job, in a column that ran in another Western New York newspaper.
A couple in the city in which I worked at that time was taking great offense to the notion that a home for people with developmental disabilities was being built in their neighborhood, so much so that they sought to stop it. They weren’t reticent in their tactics: Harsh words and fear and claims of danger and problems to come were being used to great effect to get others on their side.
People from the group, parents of those with disabilities and those with disabilities themselves had banded together to combat this, saddened by the misinformation and rather angered that someone who just didn’t understand ’ nor wanted to ’ would resort to it. Their children deserved the chance to live in a residential, rather than an institutional, setting, they said. Wouldn’t you want the same for your kids?

Wednesday, July 1, 2009

Funds for Disabled Poorly Spent

Columnist Terry Bibo of the Peoria (Illinois) Journal Star blasts state officials for continuing to pump funding into a developmental center, whose future has been in limbo despite closing in August of 2002. Meanwhile, she writes, "30,000 people with may lose their services from the Illinois Department of Human Services Division of Developmental Disabilities thanks to budget cuts. That doesn't count the thousands who are on waiting lists"

People with Disabilities Celebrate Department's Name Change

Cheers to the national "Erase the R word" campaign! It's definitely having an impact.

With the start of the fiscal year, the Massachusetts Department of Mental Retardation has taken on a new name.
The agency, which serves developmentally disabled children and adults, adopted the name Department of Developmental Services Tuesday, signaling a victory for the disabled and their providers who lobbied for years against the pejorative phrase “mental retardation.’’
“I was always ridiculed because I was different,’’ said Craig Smith, 52, of Brighton, who suffers from chronic memory loss. “This day changes everything. It’s about respecting people.’’
Before the House and Senate approved the name change last year, Smith and other members of the Massachusetts Advocates Standing Strong, a nonprofit group of those with cognitive and developmental disabilities, fought hard for the measure. They rallied for it at the State House, called, e-mailed, and wrote letters to legislators, and told their stories.