Wednesday, December 31, 2008

Parents of Students with Autism Seek to Keep Kids at Schools Closer to Home

Interesting that taxpayers are paying millions to have special needs children attend schools requiring hours of bus travel. Parents of children without special needs wouldn't tolerate this, why should parents of children with special needs?

Tuesday, December 30, 2008

Oklahoma Health Insurer to Cover Autism

TULSA, Okla. (AP) - An Oklahoma health insurer says it plans to offer coverage for clients with autism. The coverage is expected to go into effect in January, 2010.

Donations Help Illinois Group Home Remain Open

Bravo to Clare Ansberry of The Wall Street Journal, whose coverage of a group residence in Illinois which was about to close prompted enough contributions to persuade Community Link to keep the home open. What so many people don't understand is that if these residences are forced to close due to lack of funding, the residents may end up in nursing homes or other institutions, which are more costly to operate and are not appropriate for these individuals with developmental disabilities. I've pasted entire story below, as Wall Street Journal links expire if you are not a subscriber.

An Illinois nonprofit will keep open a small group home for people with developmental disabilities after receiving $55,500 in private donations -- more than half of the $103,000 needed to operate the home for a year.
The home and its five residents were the subject of a Nov. 28 page-one article in The Wall Street Journal. John Foppe, executive director of Breese, Ill.-based Community Link, which runs the home in Highland, said the outpouring of donations from readers in favor of letting the five residents stay together in their home persuaded the board to keep it open. Several people made donations through the Web site
"We're still not there, but the board met last week and decided to hold off the closing," Mr. Foppe said. He added that the agency is exploring ways to help raise the remaining $47,500.
Community Link had planned to close the home earlier this month because it could no longer afford to operate it. The residents were to be moved to three other Community Link homes after living together for several years.
The agency said its main funding source, the state of Illinois, owes it $1.3 million. Mr. Foppe said he expects to receive some reimbursement from the state in coming weeks.
Illinois came in 51st among all states and the District of Columbia in providing small residential settings for people with developmental disabilities, according to the 2008 State of the States in Developmental Disabilities compiled by the University of Colorado.
About 30% of Illinois residents with developmental disabilities live in homes with six people or fewer, compared with a national average of 70%.
Mr. Foppe said Community Link's long-term plan includes building an endowment to subsidize care that is underfunded by the state, as well as increasing its cash-flow reserve to manage state-funding delays.
Residents, all with varying degrees of developmental disabilities, were told Monday they could stay together. One resident, JoAnn Lange, celebrates her 54th birthday next week. "Now I get my birthday wish!" she said.
Write to Clare Ansberry at

Here is the original Page 1 Wall Street Journal story which prompted the contributions:

NOVEMBER 28, 2008
Hard Times Hit Home for a Band of Five in Illinois
Stuffed Animals Are Packed in Boxes; Victor Wilhold's Uncertain Future
HIGHLAND, Ill. -- Five friends, one blind, another an amputee and all developmentally impaired to some degree, are losing their home here next week.
Community Link, the nonprofit agency that runs the group home, can no longer afford to keep it open. Its main source of funds, the cash-strapped state of Illinois, owes it $1.4 million. Positions have been consolidated and spending has been cut back. Last week, John Foppe, Community Link's executive director and himself disabled, went to the local bank and begged for a new line of credit to make his payrolls. Even if it's approved, the home will be closed.
Movers arrive Tuesday. The five will end up in three different homes spread around the county. Their belongings -- mainly clothes, stuffed animals, puzzles and little ceramic statues -- are being packed in boxes.
The agency is trying to make the move smooth but acknowledges it will be disruptive to everyone, particularly Victor Wilhold. Mr. Wilhold, 59 years old, is the eldest, chronologically, but the most childlike of the five. Born with Downs Syndrome, he is largely nonverbal and functions at the level of a three-year-old.
In the past, when his routine was changed, he grew reclusive, retreating to a darkened closet with an assortment of toys, according to his sister, Mary Harris. "I'm afraid he will go back into his shell," she says.
Over the years, he and the other four residents -- three women and one man -- have formed their own makeshift family. Sometimes they bicker. One is stubborn, another feisty and another is a mother hen. But they also care for each other. If someone is sick and can't go to a movie, the others vote to stay home.
Ms. Harris asked Community Link to keep this little family together in their next residence, but that would mean displacing other people there.
What is happening in this southern, largely rural corner of Illinois is echoed around the state as a history of low funding for community living collides with the economic crisis, forcing drastic cuts. People with disabilities are being moved into larger, unfamiliar settings or spending their days idle because vans no longer take them to sheltered workshops to do jobs for pay.
"Even in decent economic times, Illinois was not a state that funded people with developmental disabilities to the extent that other states have," says Lilia Teninty, director of the state's Division of Developmental Disabilities.
Illinois came in dead last -- 51st -- among all states and the District of Columbia in providing small residential settings for people with developmental disabilities. In terms of overall spending for community programs, it ranked 43rd.
Community Link hasn't been paid by the state since July for many services. Mr. Foppe and his staff whittled budgets, eliminating small bonuses, rug cleaning and renovation plans.
Although helpful, those cuts weren't nearly enough. Reluctantly, he decided to close the Highland house.
It was the smallest of six such homes, which has meant more freedom, privacy and choice for residents. It was also the most expensive to run for those same reasons. Moving to something bigger is a step in the wrong direction, Mr. Foppe says, but he has little choice.
Having been born without arms and learning to use his feet to drive, eat and dress, Mr. Foppe isn't easily discouraged or frustrated. But he is becoming both. "Even a sponge can only hold so much water," he says.
Chris Gebke, who runs Community Link's community-service programs, had the delicate task of figuring out where to move everyone. Jane Webb, who is legally blind and prone to seizures, needs a private room so that she knows where everything is and doesn't trip on a roommate's belongings. Her furniture must line the walls. Her shoes and slippers need to be tucked under a desk.
Lorraine Cousino's family wanted to make sure she could go freely outside in her wheelchair and smoke a cigarette after dinner. That meant moving her to a house with a garage so she would be protected out of doors.
JoAnn Lange wanted a house close to a nursing home so she could volunteer.
Ms. Gebke met with employees of the homes, reviewing seemingly small but important details. Allen Korte has a special shampoo. You have to let Mr. Korte make the coffee in the morning or he gets upset, she told them.
Even with all the details in place, she worries. Ms. Lange will be leaving her hometown, where her 78-year-old father lives. The highest functioning resident, she learned to use public transportation to volunteer at the local nursing home. She has cancer and her support group is there.
She cried when told of the move. "All my relations are here. I'm originally from Highland. Now I've got to move my routine," she says.
Ms. Cousino says she will miss the neighbors, especially the boy next door. She met him when he was three and has watched him grow into a teenager.
But it will likely be hardest on Mr. Wilhold. His sister, Ms. Harris, says he was shuffled through a series of inappropriate settings after his parents died, including a nursing home for old people. And he was put on medications for conditions he didn't have, for reasons she doesn't understand. He came to the Highland House in 2002.
When he first arrived, he kept to himself and his stuffed animals, carrying dozens of them throughout the day from room to room. Renae Donohoo, who works at the home, couldn't get him into the van without putting a Tigger from "Winnie the Pooh" there first.
"Now he leaves his animals on his bed," she says. "He doesn't need them because he's in his happy spot," referring to the house.
He didn't speak growing up, but lately has been saying a few words. "C'mon old lady, let's go," he ordered Ms. Lange.
The others here are protective of him and have come to understand his gestures. When he taps his mouth, he's thirsty.
Ms. Lange leads him by the hand up the driveway when he gets off the bus, and buys him 3 Musketeers bars. After dinner, Mr. Wilhold accompanies Ms. Cousino to the garage for her evening smoke, opening and closing the door for her and her wheelchair. Of the five, she is the most outspoken, but with Mr. Wilhold she is gentle. Outside, she gives him one earpiece of her MP3 player so they can both listen to Elvis.
"I don't how it will be for Victor," says Ms. Donohoo. "He has his own little room here. It will be a big adjustment after all these years."
Fortunately, she says, he will share a bedroom with housemate Mr. Korte, which should make it easier but by no means carefree. Mr. Korte likes to go to bed early. Mr. Wilhold can stay up. Mr. Korte keeps his room immaculate. Mr. Wilhold doesn't.
This weekend, the five friends will celebrate Allen Korte's birthday with his favorite dessert, chocolate cheesecake. He will sit at the head of the table, as he always does. He will have to adjust to new seating arrangements at his new house.
Write to Clare Ansberry at

Monday, December 29, 2008

Juggling Work and Caring for a Child with Special Needs

An interesting 2-part series from Boston Globe on how parents cope with their jobs and caring for a child with special needs. The writer, Maggie Johnson, is author of "Distracted: The Erosion of Attention and the Coming Dark Age."

Illinois Lawmakers Hear Advocates' Opinons on Blueprint for Change

The Illinois Council on Developmental Disabilities hosted a town hall meeting recently to highlight a new plan to redesign state services for people with developmental disabilities that emphasizes shifting from institutional to community services.
The Blueprint for System Redesign in Illinois calls for reducing the waiting list for supports by providing services for 2,500 new people each year through the year 2014. There are currently more than 15,000 people on that waiting list.,disabilities-services-overhaul-NA121008.article

Fate of Group Homes Shaky

A look at New York State's budget crisis and how its impacting the development of group residences for people with developmental disablities. At one point the state but all development of such programs on hold.

Boy's Book Provides Insider's View of Autism

A New Jersey paper's story about a boy who wrote a book about understanding autism for his bar mitzvah.

Lets Find One Point of Agreement Among Autism Advocates

Interesting blog that asks autism advocates to identify one priority - that everyone can agree on - in the coming year. Check it out.

Wednesday, December 24, 2008

Tough Economic Times but States Still Finding Funding

This is a piece done by the NBC affiliate in Bismarck, North Dakota, which discusses state funding for people with developmental disabilities. Even with the tough economic times, some states are finding ways to provide funding to various organizations who specialized in assisting people with developmental disabilities.

For more information, click the link below....

Military parents lobby for help for kids with autism

It is estimated that 13,243 of the approximately 1.2 million children of active-duty military personnel have been diagnosed with autism spectrum disorder. But only 1,374 are qualified to receive treatment under the extended care arm of the Pentagon's health care system.

"Living with Autism" Study Study Sheds New Light on Parents’ Life-Long Fears, Anxieties and Critical Supports Needed to Raise a Child with Autism

Easter Seals' "Living with Autism" study certainly reflects the concerns of many parents of children with autism. You have to wonder, however, why the media continues to focus its coverage on children when there are adults on the spectrum who are leading productive lives in the community. They are earning paychecks, living with supports in the group residences and apartments, and going to movies and restaurants, just like anyone else.

Check out some interesting comments on the study:

Tuesday, December 23, 2008

Budget Crisis for People with Disabilities

Money has been tight when it comes to funding programs for people with developmental disabilities. 2009 could be the worst year in a decade, while the need for services continues to grow.

For more information on the budget crisis and what agencies and parents are trying to link below.

Monday, December 22, 2008

"More with Down Syndrome Outliving Their Parents"

An interesting read from the Northwest Herald in Illinois, about a family envisioning and planning their eight-year-old daughter's future.

"Mothers Refuse to Give Up Down's Children"

Wasn't that long ago in the U.S. that parents were told that they should put their babies with Down syndrome and other developmental disabilities into institutions. Check out what's happening in Russia:

And an interesting piece about a theater group featuring people with Down syndrome in Russia.