Libertyville farm a model for disability programs

By Karen Meyer
http://abclocal.go.com/wls/story?section=news/disability_issues&id=8409849
October 30, 2011 (LIBERTYVILLE, Ill.) (WLS) -- Fifty years ago, a pet shop on North State Street hired 12 people with developmental disabilities. They successfully performed their tasks, which led to the idea of expanding the business to north suburban Libertyville, where it became Lambs Farm.
Lambs Farm celebrates 50 years with great pride. They have become a model for programs designed for people with developmental disabilities across the country and in many parts of the world.
Located just off the tollway, Lambs Farm is a sprawling 72-acre living and working community for more than 200 adults with developmental disabilities.
"Our people today range in age from 30 to 77," said Lambs Farm president and CEO Dianne Yaconetti. "We actually, unfortunately, just lost one in February that was 87 years old. They are living full, happy, productive lives and we would like to think that their experience at Lambs Farm has a lot to do with that.
"We have 140 people living on our campus. We have another 30 people living in six family dwellings in the surrounding communities that we own and operate, which gives people a lot of different choices of how they want to live.
"We have a number of businesses that are members of the local business community...We have a restaurant with good food and a pet shop and a farm yard...We have a number of participants working there."
Lambs Farm is named from a Bible quote, "Feed my lambs."
"It was originally called the Lambs Pet shop," said Yaconetti. "Obviously, the farm element came when W. Clement Stone brought the farm here in '65."
The founders of Lambs Farm, Bob Terese and Corinne Owens, were school teachers.
"When they started to work together at the Bonaparte school prior to founding Lambs Farm, neither of them had met a person with developmental disability," said Yaconetti.
Some of the residents, like Janice Small, have been part of Lambs Farm since it started.
"Before I came here I was in the day program," said Small. "I traveled back and forth. I worked downtown at the State Street store with Bob and Corinne. I lived with my mother and my father and my brother."
At 71 years old, Small lives a full and busy life.
"Number one, I'm working at the work center part-time and part-time at the restaurant. I'm a busser, I do everything. I greet the people, I talk to people. sometimes I answer the phones, sometimes I make drinks," Small said.
"The fact that they're mildly to moderately disabled gives us a chance to really watch them grow," said Yaconetti. "That's what Lambs Farm is all about. It's a place where they can come, they can choose what their lifestyle is supposed to be."
There is much to see and do at Lambs Farm. For more information go to www.lambsfarm.org.
They also have a book called Lambs Farm: Where People Grow.

Left behind: Disability community still faces employment crisis

http://www.post-gazette.com/stories/sectionfront/life/left-behind-disability-community-still-faces-employment-crisis-320899/

By Ann Belser / Pittsburgh Post-Gazette

People with disabilities are doing worse now than they were at the height of the unemployment crisis brought on by the Great Recession.

The U.S. Bureau of Labor Statistics just started tracking the employment of people who are disabled in June 2008. And in the post-financial crisis, that community is still in crisis.

Using statistics that are not seasonally adjusted, the bureau has found that the unemployment rate for people who do not have disabilities was 8.5 percent in September compared to 16.1 percent for people with disabilities.

While unemployment for the non-disabled population dropped a full percentage point, from 9.5 percent to 8.5 percent, since June 2009 -- when the recession ended -- the unemployment rate for people with disabilities is higher than it was at the end of the recession: 16.1 percent in September versus 14.3 percent in June 2009.

The percentage of people with disabilities who are counted as unemployed does not tell the whole story. While nearly 70 percent of the non-disabled population of the U.S. takes part in the labor force, only 21 percent of the disability community does.

Despite the passage of the Americans With Disabilities Act in 1990, advocates for people with disabilities say they still face discriminatory hiring practices because of mistaken notions that they will cost the company money.

"The truth is most accommodations are very low-cost," said Susan Henderson, the executive director of Disability Rights, Education and Defense Fund in Berkeley, Calif.

For employees who are blind or have impaired vision, she said, the accommodation can be as inexpensive as screen reading software and a clear aisle to the bathroom.

People who use wheelchairs usually just need a desk that is adjusted to the right height.

Chaz Kellem, the manager of diversity initiatives for the Pittsburgh Pirates, uses a wheelchair but said the accommodations he needed for work were already there when he joined the Pirates in 2005.

"I do have a keyboard tray and mouse tray at my desk," he said, "but the person before me also had a keyboard tray and mouse tray."

PNC Park, where his office is located, was designed to be wheelchair accessible.

"The truth is most businesses are already employing people with disabilities," Ms. Henderson said, noting that disabilities can include diabetes, cancer and Crohn's disease.

"There are probably people in most work places that have a disability, but no one knows it," she said.

When people think of disabilities, they usually picture someone who is obviously disabled. For instance, the U.S. Department of Labor's Office of Disability Employment Policy's brochure on diversifying work forces by recruiting, hiring and retaining employees with disabilities has a photo on the front with the usual diversity buffet: some women, some minorities and the obviously disabled person -- the only white man in the photo -- is sitting in a wheelchair.

Jill Houghton, interim executive director of the U.S. Business Leadership Network in Washington, D.C., said rather than talk about "accommodations" for people with disabilities, she prefers to use the term "productivity tools," which she credits to Kathy Martinez, the assistant secretary of the labor department's Office of Disability Employment Policy.

Ms. Houghton said that is what any changes are all about: making workers more productive.

The reality, she said, is many people with disabilities start their own businesses when they can't get traction in the labor force.

A boost to those business owners is recent federal legislation that recognizes businesses owned by people who are disabled as minority-owned businesses, making them eligible for various government programs.

At the Three Rivers Center for Independent Living in Wilkinsburg, executive director Stanley Holbrook said the organization can work with employers and employees to make sure accommodations are reasonable so that employees with disabilities perform up to the expectations in place for other workers.

Read more: http://www.post-gazette.com/stories/sectionfront/life/left-behind-disability-community-still-faces-employment-crisis-320899/#ixzz2MW5fvtWs

Colleges Step Up to Meet Dyslexia Challenge
Schools expand efforts to assist talented students with a common disability.
By Print Meryl Davids Landau

September 27, 2011
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Natalie Tamburello at Stanford University's Psychiatry and Behavioral Science building in Palo Alto, Calif., on July 8, 2011.

Even high-achieving students may find it difficult to be admitted to competitive colleges, but for those with dyslexia, the hurdles can be higher. A growing number of colleges, though, are showing a greater appreciation for these students.

Some 45 college admissions deans from across the country gathered at Stanford University this past June to learn about high-achieving dyslexic applicants. Experts shared the latest research, and well-known figures—including California Lt. Gov. Gavin Newsom, financier Charles Schwab, and Delos "Toby" Cosgrove, a heart surgeon and CEO of the Cleveland Clinic—described their experiences coping with the disability.

"Our goal is to help colleges realize that, because of their intelligence, out-of-the-box thinking, and perseverance, these students can add luster" to their schools, says Sally Shaywitz, the Audrey G. Ratner professor in learning development at Yale University who helped organize the event.

[Read how learning disabilities may offer an edge in college admissions.]
A decade ago, Shaywitz, author of Overcoming Dyslexia, demonstrated in her research that fully one in five students has the condition, with males and females sharing it in roughly equal numbers. Dyslexia makes it difficult for a person to retrieve or correctly order the basic sounds, or "phonemes," of spoken language (like the "k," "aah," and "t" sounds that make the word cat, for example).

The result: slow, laborious reading, problems retrieving the right word when speaking—especially when under stress—and writing that is rife with misspellings. These issues can cause teachers who don't understand to misjudge these students' ability.

In a 2010 study, Shaywitz documented that while IQ level and reading ability are linked in typical readers, they are not linked in people with dyslexia. Many high-achieving dyslexics have compensating strengths that enable them to rise to the top in various fields.

The main stumbling block for even the most accomplished college applicants with dyslexia is the standardized entrance exam. Under the Americans with Disabilities Act, testing agencies have a duty to provide accommodations to students with disabilities. These commonly include more time to take the test, use of a private room, or access to a scribe to record answers.

According to a 1991 study conducted at the University of California–Berkeley, this makes a difference. Dyslexic students taking a standardized reading test scored on par with their peers when granted extra time, but lagged significantly when they were not. Importantly, students without the disability produced virtually the same scores regardless of whether they were given additional time.

[Get tips from the U.S. Newscollege test prep guide.]
But getting such help can be a challenge for those who need it. Each year the College Board administers the SAT to more than 2 million individuals. According to Steven Pereira, the College Board's executive director of services for students with disabilities, about 32,000 members of the class of 2010 took the test with accommodations.

Pereira says that about 85 percent of all students annually who request assists receive them if they can document their disabilities. However, Shaywitz points out that since dyslexics alone are about 20 percent of the population, the fact that so few students are accommodated suggests there are flaws in how they are handled.

Lori Vise, an independent educational consultant at Bass Educational Services, believes several factors may be at work, including students' erroneous fear that their test results will be flagged when reported to colleges. Families also may not be aware that such options exist. And though the ADA requires testing agencies to provide accommodations in a timely way, Shaywitz says, the review process generally takes weeks and can be burdensome.

The College Board, for instance, requires students to supply documents addressing seven criteria, including their relevant educational and medical history, descriptions of the diagnostic examinations done, and an explanation of how the condition affects their test-taking ability. Many families may simply not have the wherewithal to file the necessary paperwork.

In February, the Justice Department reached a settlement with the National Board of Medical Examiners, which administers exams for medical licenses, that could provide a template for how testing agencies meet the ADA requirements. The settlement stipulates that the NBME must supply reasonable accommodations to test-takers with disabilities and make documentation less burdensome. But until all testing agencies adjust their policies, Vise suggests that students seek classroom accommodations as early as freshman year in high school in case additional testing or records are required.

Increasingly, colleges are assessing how standardized testing and their own admissions processes may be leading them to exclude talented dyslexic students. Greg Buckles, the dean of admissions at Middlebury College, says his school has long evaluated prospects "holistically"—that is, looking beyond exam scores and GPAs.

But after attending the conference for deans last year, Buckles says, he now feels better able to evaluate dyslexic students whose test scores may fall below the school's norms. If they demonstrate a flair for film or video or if they have developed "unusually strong leadership or consensus-building skills," he notes, "they can bring these attributes to our campus."

The kinds of ADA-mandated accommodations that dyslexic students generally get are equivalent to those for students with other disabilities. Besides extra time on tests, they might receive textbooks and other reading materials in audio formats and get permission to receive class notes from the instructor or a fellow student.

An understanding professor can also be key. "In my senior year at the University of Chicago, my thesis adviser kept looking at my drafts and saying, 'You have such great ideas, but you are messing up the grammar,'" recalls Allison Schwartz, who graduated in 2008 and received her master's degree in American studies from Columbia University this past spring. The professor showed Schwartz how to correct her errors, and a teaching assistant even wrote out a set of grammar rules for her to memorize.

[Read how one dyslexic student earned 11 college degrees.]
Still, not all colleges offer sufficient accommodations, laments Vise. For example, even schools that have the technology and staff to scan textbooks into computers often may not complete this task until weeks into the semester. Well-endowed, private colleges tend to offer more support, Vise says. But she adds that some public institutions, like University of Arizona and University of Vermont, and Marshall University in West Virginia, do have extensive resources.

Though there is no single model to guide dyslexic students applying to college, experts and those who have made it through the admissions process offer some useful tips:

1. Consider class size: Megan Diffey applied to the Burnett Honors College at the University of Central Florida because its classes are limited to 20 or fewer students. Similarly, Natalie Tamburello, now a senior at Whitman College, was attracted by the school's modest student population of about 1,500. "I knew my professors would understand me better at a smaller school, because they would have a chance to get to know me," says Tamburello, who currently posts a 4.0 GPA in her psychology major and is considering going on to medical school.

[Learn what it's like to attend Whitman College and others in the Pacific Northwest.]
2. Find a mentor in high school: Even colleges that don't require a letter of recommendation will be impressed by a glowing report from a teacher or guidance counselor describing how you advocate for your educational needs, says McGreggor Crowley, associate director of admissions at Massachusetts Institute of Technology, also a conference attendee. Colleges that offer resources want to be sure you know how to access them.

3. Visit disability offices: The difference between the promises on a school's website and the reality can be striking, asserts Vise, who says she spends a quarter of her work time visiting campuses. She looks for the location of a school's learning disability resource office—centrally located or so far away you'll never stop there?—and the number and helpfulness of the staffers.

4. Be aware of your learning style: Shaywitz recommends talking to current undergrads or recent graduates to get a sense of how students are assessed. Helpful questions to ask include: Can meetings be set up one-on-one with a professor or teaching assistant to demonstrate your knowledge of a topic outside the high-stress classroom setting? Can students offer to write a report or do a project to demonstrate subject mastery?
Shaywitz notes that, even if you cannot find the answers to these questions in advance, schools that show themselves to have supportive environments in other ways often will have faculty members who are equally supportive and flexible.

5. Note the foreign language requirements: Although a few dyslexics may not have trouble learning a foreign language, most are as stymied trying to read Italian as they are English, says Katherine Schantz, head of the Lab School, an independent institution serving elementary through high school students with learning disabilities in Washington and Baltimore. One option is to apply to colleges with either no foreign language requirement or a process for waiving it.

6. Nail the interview: Meeting with an on-campus or alumni interviewer can help you showcase your accomplishments, Schantz says. "Time and again we have students who get into a competitive school because of their interview," she adds, explaining that interviewers are particularly impressed by students who are insightful about their learning disabilities and how they have compensated for them.

7. Decide whether to disclose: The decision whether to discuss one's dyslexia on a college application must be handled individually, says Vise, who, along with Schantz, voices concern that some admissions officers still erroneously believe the disability tracks with intelligence. But when colleges have a history of supporting learning-disabled students, they say, applicants should feel comfortable raising it.

Megan Diffey was one applicant who wanted colleges to really understand who she is. Diffey wrote about her disability on her application essay. "The dedication and extra time I put into my work is a big part of my character," she says. The University of Central Florida apparently agreed. Not only did the school accept her, but it admitted Diffey to its highly competitive honors college.

http://www.usnews.com/education/best-colleges/articles/2011/09/27/colleges-step-up-to-meet-dyslexia-challenge_print.html

My thoughts:

This was such an informative article!  It just goes to show another example of why we can't base all educational decisions on test taking.  Some of the most brilliant people in the world have had some sort of learning disability.  Even Enstein failed classes in school.  I had a professor in college that said when she was in 2nd grade, she was so proud of herself because she could write in cursive, only to find out her cursive was perfect, but backwards.  That was when her teachers figured out she had a learning disability.  Eventually she went on to get her doctorate and become a college professor.  It took her a great deal of time, but she didn't let her disability hold her back.  She didn't even let the fact that she hadn't read a complete book until she was in her 30s hold her back.  People like her should be an example and role model for other students with learning challenges that it is possible for them to go on to college, despite their learning disability.  I think the proper transition support in high school is part of the reason the number of students requesting accomodations has risen.  It goes to show how successful and important the transition process is.

States To Get Millions To Boost Disability Employment

States To Get Millions To Boost Disability Employment

By Shaun Heasley | September 28, 2011

The federal government is sending more than $21 million to a number of states to address the specific needs of people with disabilities who are looking for work.

California, Hawaii, Ohio, South Dakota, Tennessee, Washington and Wisconsin will each receive between $1.8 and $6 million of the new funds from the U.S. Department of Labor, officials said this week. The grants represent an expansion of a disability employment initiative that's already underway in nine other states.

Under the program, states are expected to use the money to boost "education, training and employment opportunities and outcomes" for young people and adults with disabilities who are unemployed or underemployed, including those receiving Social Security benefits, federal officials said.

Specifically, the grants are intended to enhance coordination on employment issues between various agencies including vocational rehabilitation services, independent living centers and local nonprofits. In addition, the funds will help ensure that the Labor Department's One-Stop Career Centers in the states are better equipped to aid job seekers with disabilities who currently rely on Social Security.

"During these difficult economic times, it is important to ensure that all workers, including those with disabilities — who as a group face employment barriers even during times of prosperity — are able to benefit from the Labor Department's employment and retraining services," said Secretary of Labor Hilda Solis. "These federal grants will help to provide services and support to individuals with disabilities in seven additional states, and put them on the path to permanent and secure jobs."

Nine states — Alaska, Arkansas, Delaware, Illinois, Kansas, Maine, New Jersey, New York and Virginia — already receive similar grants.

In addition to the new funds directed at states, the Labor Department is also sending $3.78 million to four centers located in Connecticut, New York, New Jersey and Washington, D.C. that conduct research and provide technical assistance on employment issues for people with disabilities.

http://www.disabilityscoop.com/2011/09/28/states-millions-employment/14131/

Vocational training key for students with autism

Vocational training key for students with autism

BY SARAH HOFIUS HALL (STAFF WRITER)

Published: October 23, 2011

Lightbox linkLightbox linkIn a classroom at Marywood University, a group of students practice writing checks. Carefully, they fill out the piece of paper, making sure the dollar amount is correct and the decimal is in the right place. Then, they go to work.

Some work in housekeeping, others in the dining hall. Some help deliver mail.

It's a real-life lesson on life after high school graduation, and for many students with autism, a preparation for the unknown.

As more students who are diagnosed with autism go through the school system, educators are trying to prepare students for what comes after they finish school.

SOAR at Marywood

In the corner of the lower level of the McGowan Center at Marywood University, students with autism learn life skills in the morning. In the afternoon, they work at jobs across campus, in hopes they will learn job skills for their future.

A partnership between the Northeastern Educational Intermediate Unit and Marywood, the SOAR (Students On-Campus Achieving Results) program started in 2008.

Students learn how to read bus schedules and take public transportation. They take trips to the mall, job fairs and CareerLink. They eat lunch with Marywood students in the dining hall and get a taste of college life.

"I call it the miracle of Marywood," NEIU teacher Jack Kirby said.

Students were recently working on spelling words and a unit on health, nutrition and safety. They also talked about responding to authority in work situations and about making eye contact.

"They become so much more confident and adult like," said Anne Mary Doyle, who oversees the program for the NEIU. "It's just such a great feeling, when you talk to them and show how far they've come in confidence and self-advocacy."

Sean Dixon, 20, of Dunmore, graduated from the SOAR program in 2010. At SOAR, Sean found a group that was more accepting of his differences. He made good friends and great progress on work readiness.

In the afternoons at Marywood, he worked on data processing, entering information from prospective student applications, and in housekeeping, where he vacuumed and dusted.

He's still looking for a job.

"I'm the perfect candidate," Mr. Dixon said. "I work hard, and I'm on time. I know how to do it because I learned from Mr. Kirby."

Rachel Boyer graduated from the program this spring, and now works in the Marywood dining hall, clearing tables and sorting silverware, like she learned during SOAR.

She is one of only two of the eight program graduates who have found competitive employment.

"That's the sad part," Mr. Kirby said.

Mrs. Doyle agreed.

"It's so difficult for anyone to find a job," she said. "Add a label, and it's that much harder."

Victory Village

A house on Church Street in Jessup has a banner hung on its stairs: "Don't let your disability dictate your future."

Each morning and afternoon, the home is filled with students who have autism and other special needs. They're told, "This is your home."

The students, part the Victory Village program run by the NEIU, learn skills for post-graduation: how to take care of themselves - and how to take care of the home.

A program in the morning for mainly 16- and 17-year-olds focuses on life skills. They have chores that include preparing snacks, taking out the trash, answering the phone and putting dishes away.

For birthdays, the student having the birthday picks a meal the other students make, such as lasagna, meatloaf or chicken tenders and fries. The students have to create lists and go to the grocery store to buy ingredients, where they compare prices and later do price calculations.

For students who are in their third year of the program or who will be graduating, the focus turns to work. On one recent day, teacher Joan Murphy was helping students memorize their social security numbers - a bit of information they will need when they start filling out job applications.

A couple times each month, the students take a trip to an area business, where they "try out " different jobs, like cleaning at Riverfront Sports Complex or setting up for banquets at Genetti Manor.

For jobs, they search for openings in the newspaper's classified section, develop their resume, practice job interview skills and learn how to fill out job applications.

Teachers also make sure students understand their disability, and try to encourage students to have self-esteem and confidence and learn how to explain adaptations needed to an employer.

"There is a job out there you are absolutely able to do," Ms. Murphy told the students.

Six students will be graduating from Victory Village this year, adding to the growing list of students looking jobs.

"Very few are competitively employed, but it's not for the lack of trying," said Mrs. Doyle, who also oversees Victory Village.

Mock motel

In the former teacher's lounge at Abington Heights High School, two beds and a bathroom are helping students learn skills for after graduation.

District officials have transformed the lounge into a mock hotel room, where students in the autism support class are learning how to clean.

"Our goal is to transfer skills to the work environment," said Sam Sica, the district's special education director. "We want to make it as realistic as possible."

In the Abington Heights School District, 21 students in grades kindergarten through 12 are assigned to autistic classrooms. Another 25 students who are on the autism spectrum require minimum or little support in regular education classrooms.

Starting at age 14, students' individualized education plans must address what the students' goals are after high school. Special education students can stay in school through age 21. Through the IEP, ways to reach the goals are addressed.

With many hotels in the Abingtons, students will hopefully be able to transition to jobs in the community. But even if students do not end up working for hotels, they will learn about staying on task and following rules, Mr. Sica said.

With donated items, including the two beds and dresser, students are learning how to vacuum, make beds and clean the bathroom. Drapes will cover a window where teacher Mari Hendershot can look through from another room. She hopes to even install a timeclock.

Around the building, autistic students in the high school class load paper into photocopiers, clean cafeteria tables after breakfast is served and do other real-life tasks.

"Vocational training is really the track we need to move in, not just academics," Mr. Sica said.

Contact the writer: shofius@timeshamrock.comSOAR documentary

A documentary about the SOAR program at Marywood was recently screened.

The 25-minute documentary, directed by Alexander Monelli, includes interviews with SOAR students, faculty and staff and Marywood graduate and undergraduate students.

A trailer of the documentary can be viewed at http://www.youtube.com/watch?v=4J4rGdT0ZxA. A copy of the documentary, which is being sold for $5, can be obtained by calling Marywood associate professor Patricia Arter, SOAR program director, at 348-6211, extension 2511.

Read more: http://thetimes-tribune.com/lifestyles-people/vocational-training-key-for-students-with-autism-1.1220484#ixzz1bpri0YOE

Down's Syndrome case could see thousands of special needs adults taught alongside children

Down's Syndrome case could see thousands of special needs adults taught alongside children

The father of a woman with Down's Syndrome is attempting to force a council to let her stay in school until she turns 25, in a case that could see thousands of special needs adults taught alongside children.

http://www.telegraph.co.uk/education/8846974/Downs-Syndrome-case-could-see-thousands-of-special-needs-adults-taught-alongside-children.html#.Tqcsa2yYabM.email

By Daily Telegraph Reporter

9:44PM BST 24 Oct 2011

Anthony Williams is locked in a dispute with Essex county council over whether his 22-year-old daughter, Maria, should be allowed to continue in her education at Columbus College, Chelmsford, where she has studied since she was 16.

Mr Williams wants to block the council's attempts to force Miss Williams to leave school.

The Court of Appeal heard that Miss Williams entered mainstream education at the age of five but was always behind her peers and was transferred to the specialist Columbus College in 2006.

She has a reading age of nine, cannot tell the time and has no concept of money, but loves drama, dance and the expressive arts. She has only missed college when she was laid low by a heart operation at 16.

The head of the college is happy for her to stay on until she is 25, the court heard.

But, since 2008, the council has been saying that Miss Williams's Statement of Special Education Needs only ran until she was 19, after which she would not be entitled to publicly-funded education.

Following a long-running legal wrangle with her father, the council has brought the case before the Court of Appeal, asking three senior judges to rule on the issue.

David Wolfe, for Mr Williams, told the court that a "flexible approach" should be taken, which would prevent those who needed ongoing education "falling off a cliff when they hit 19".

He said: "Although a statement can only be made in the first place for someone who is at the time 'a child', statements do not automatically lapse, for example simply because the person ceases to be 'a child'."

Fiona Scolding, for the council, warned judges that allowing students with special educational needs to continue in schools past 19 would have a massive impact on local authorities' finances.

"There are approximately 223,000 children and young people in England and Wales with statements of special educational needs," she said.

"This case is about Maria Williams and its facts, but it is applicable to the other young people approaching or having reached 19, who may well wish to stay in school until their late twenties.

"It is a point of real importance, as it raises a significant issue of principle as to when a local authority's responsibility ceases for those with statements of special educational needs.

"Local authorities have, to date, considered that their responsibilities end, in line with the code of practice, the year that a child becomes 19.

"This also raises questions about the designation of schools and how they would manage to accommodate these individuals, and also practical questions about safeguarding younger children if there are a cohort of adults being taught with them."

Recognising the widespread importance of the case, Lord Justice Maurice Kay, sitting with Lord Justice Moses and Mrs Justice Baron, reserved their judgment, which will be given at an unspecified date in the future.

Preparing for the future

When parents are gone, arrangements for the autisic can be a challenge

By Rick Wills
PITTSBURGH TRIBUNE-REVIEW
Sunday, October 2, 2011

The thought of what will happen to her autistic son when she's gone causes Marie Mambuca great anxiety.

Doctors diagnosed Tony Mambuca-Capanzzi, 20, with autism at age 3 and he still lives at home.

"He does not understand money. He would eat everything all at once. He'd walk into the street without looking. And who even knows what other people would do to him?" said Mambuca, 48, of West View.

She is hardly alone in her worry. As children, many autistic people attend school and live with their parents. But in adulthood, their educational opportunities dry up, their parents become infirm and die, and finding safe and stable living arrangements becomes a challenge.

Autism, which affects an estimated 1.5 million Americans, is increasing at a rate of 10 percent to 17 percent each year, according the Bethesda, Md.-based Autism Society. By 2023, about 380,000 autistic children nationwide are expected to need extensive residential services as adults, according to the Department of Health and Human Services.

"There is no other disability with this rate of increase that autism has, either nationally or in Pennsylvania," said Ann Bale, a spokeswoman for the Pennsylvania Department of Public Welfare that includes the Bureau of Autism Services.

About 25,000 people in Pennsylvania are living with autism diagnoses, 3,825 of them adults, state records show. By 2015, the number of autistic adults is expected to increase to 10,140, according to an audit by the University of Pennsylvania for the state Bureau of Autism Services.

Allegheny County has the highest number of autistic residents with 2,235 people, the records show. By comparison, 658 people with autism live in Westmoreland County, 317 in Butler County and 208 in Washington County.

"There has been a large increase of autism diagnoses in recent years, and researchers cannot figure out why," Bale said. "We hope we can meet the demand for the need for more services and for more housing."

Known as a pervasive developmental disorder, autism involves deficits in a person's ability to communicate and interact with others. The range of autism is vast -- some people can live independently, and others cannot speak or care for themselves.

The Centers for Disease Control and Prevention estimates 1 in 110 children in the United States has an autism spectrum disorder. The agency classifies such disorders as "an urgent public health concern," and is working on one of the largest U.S. studies to date, called Study to Explore Early Development, to determine risk factors such as genetics or environment.

Organizations that represent autistic people fear an onslaught of social problems in coming years.

"We think the next wave of homelessness will probably be adults with autism. There's also likely to be a high incidence of autistic people in jail. There are not a lot of support services after the age of 21, and what becomes available is complex and difficult. Not everyone has siblings, and not all siblings want to care for people with autism," said Scott Badesch, president of the Autism Society, which has 159 chapters across the country.

Said Nina Wall-Cote, director of the Bureau of Autism Services: "The public system right now cannot sustain all that is needed. We will be crisis-managing" without more resources.

The state's Adult Autism Waiver, a program designed to help house adults with autism, can accommodate only 200 people.

"Two hundred adult autism waivers for the whole state just does not cut it, even now. ... The unfortunate reality of residential programs is that someone has to die for someone else to get in," said Kim Lieb, director of The School at McGuire, part of McGuire Memorial, a New Brighton nonprofit that operates schools and work programs and houses 80 people with disabilities in 21 Beaver County group homes.

Lieb said McGuire Memorial anticipates increased demand for its adult residential services.

"Other disabilities like muscular dystrophy, cerebral palsy and Down syndrome are not increasing. Autism is increasing quickly, and it's a little scary," she said.

There is no known single cause for autism, but it is generally accepted that it is caused by abnormalities in brain structure or function, according to the Autism Society. Researchers are investigating theories, including heredity, genetics, medical problems and environmental factors.

Some people believe the use of childhood vaccines explains the higher prevalence in recent years. But studies examining trends in vaccine use and autism do not support such an association, according to the Centers for Disease Control and Prevention.

Most adults with autism cannot live on their own, said Lu Randall, executive director of Aboard AUTISM, a Western Pennsylvania service and advocacy group. Last year, Randall assisted a 62-year-old autistic woman whose mother died. The woman lived at home with no utilities and collected rainwater to use for cleaning and washing dishes.

"There are many, many more people out there like her. And with some of them, we won't find out until it's really too late," Randall said.

Peggy Best, 55, of Greensburg worries about her son Sean, 23, who is largely nonverbal.

"No one's going to take care of him like I do," said Best. "I get up every morning and help him get shaved. I cut his fingernails. I am hoping that one of my other kids will take in Sean when I can't care for him."

James Eaves, 19, diagnosed with autism at age 2, attends Highlands High School, where he sings in the choir.

"His well-being has always been my biggest worry. I have been thinking about that since he was 10. He will probably eventually be living in a group home, but I don't like to think of that," said his mother, Fredericka Stover, 54, of Natrona Heights, a nurse at the VA in Oakland, who twice underwent cancer treatment.

By 2023, the cost of providing residential services to autistic adults will be about $27 billion annually in current, noninflation-adjusted dollars -- more than a third of the Health and Human Services budget, according to federal statistics.

The Autism Society puts the bill even higher when other needs are considered -- nearly $90 billion annually for services to autistic adults and children, including research, insurance costs, Medicaid waivers, educational spending, housing, transportation, employment, therapeutic services and caregiver costs.

In Pennsylvania, state officials "have documented the scope of the problem and what it is expected to cost," Wall-Cote said. But the practical reality is how to pay for it.

Pennsylvania legislators this year instituted severe cuts, largely to welfare services and education, to offset a projected $4 billion budget shortfall. Things are worse at the federal level -- a congressional committee has a Thanksgiving deadline to identify $1.2 trillion in savings over 10 years. If it cannot, across-the-board cuts automatically would take effect in January 2013.

A measure co-authored this year by Rep Mike Doyle, D-Forest Hills, would provide services to individuals with autism and their families. The bill would cost $693 million during five years; it would direct at least $500 million to autistic adults. Doyle believes the bill has little chance of passing because of the budget climate.

"But facing this problem can't wait much longer, or it will cost even more," he said.

When educational and social services drop off or end for autistic people at age 21, many autistic adults simply stay home. Aboard AUTISM's Randall said she routinely fields calls from panicked, aging parents.

Even parents whose children are institutionalized worry.

"One day, I am going to die. One big fear I have is, who is going to give a damn about him?" Dan Torisky, 79, said about his son, Edward, 54, who lives in a group home in Coraopolis. The elder Torisky founded the Autism Society of Pittsburgh in 1965 and is its president.

Torisky said adults with autism need to be trained to work. Edward Torisky works in the laundry at Allegheny Valley School, and Tony Mambuca-Capanzzi works at Easter Seals in the South Side. "What has to be done is training beyond high school, to get them to hold a job, some sort of job, and make them high-functioning," Torisky said.

Rick Wills can be reached at rwills@tribweb.com or 412-320-7944.

Read more: When parents are gone, arrangements for the autisic can be a challenge - Pittsburgh Tribune-Review
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