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Sound Partners for Community Health
is a program of the Benton Foundation, funded by the Robert Wood Johnson Foundation, which is dedicated to improving health and health care for all Americans.

Local support for Disability Matters is provided by
The Adirondack Medical Center Foundation
 

Disability Matters Series

Disability Matters is a Sound Partners project of North Country Public Radio and North Country Centers for Independent Living. People with disabilities in rural communities face extraordinary challenges to lifelong wellness and well-being. Beginning April 25, 2005 and continuing through the following year, NCPR and Centers for Independent Living will collaborate to promote understanding between disabled and non-disabled people to influence public policy through radio commentaries, audio diaries and a year-long series of documentaries and features. Community forums will gather people interested in shaping public policy. This website will provide an archive of all programming and access to state and federal resources.

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Emerging From A History of Institutions

Martha Foley talks with Aileen Martin of the Center for Independent Living in Watertown about the changes in thinking and policy surrounding people with disabilities, and how things have changed in the last 40 years.  Go to full article

Audio Diary: Learning To Live Without Sight

Elizabeth Folwell is an editor of Adirondack Life magazine. She lost her sight unexpectedly... She'll be sharing her audio diary over the next year.  Go to full article

Little Things Can Make A Big Difference

To start our series, Disabilities Matter, this week, we look at everyday life. First, we meet Casey and her family. Casey's a little person; she was born with achondroplasia dwarfism. In just the last year, they've retro-fitted the kitchen and bathroom to give her more independence at home. It may be like dropping a pebble in a pond. Martha Foley has their story.  Go to full article

Disability Matters: At 22, Moving Out

"Group home" is a loaded term. They've been criticized for being too large and impersonal, encouraging neglect or dependence. One alternative is the Individual Residential Alternative, known as an IRA. In an IRA, four to six disabled people will live together in a regular house, with 24-hour staff to take care of them.

There's a new IRA that just opened up in Potsdam for four women. Each of the women has some kind of developmental disability. Amber Treise is cognitively impaired and legally blind. It's not the first time she's tried to live alone. Gregory Warner joined Amber this past April as she checked out her new house for the first time.  Go to full article
George Howard.
George Howard.

Disability Matters: Everday Challenges in Getting Around

How many times have you heard this: "If you don't have a car, you can't get around in the North Country." Buses are few and far between. Taxis are scarce and expensive. Most towns are not designed with the pedestrian in mind. It can takes hours, or even a whole day, to run an errand or make an appointment that in a car would take minutes. And limited transportation options restrict job opportunities. For people with disabilities, and especially people who use wheelchairs, these problems are magnified. Accessible vans and ambulettes are plentiful for Medicaid funded trips to the doctor or case manager. But there are few - if any - options for the errands and visits and excursions of everyday life. People with disabilities are too often restricted to their homes, isolated from and invisible to their communities. As part of our series Disability Matters, David Sommerstein reports on one man's efforts to get around on his own.  Go to full article
Wil Hansen in his Ford Contour.
Wil Hansen in his Ford Contour.

Freedom and Independence in a Hand-Controlled car

Wil Hansen got his driver's license on the third try when he was in his mid-20s. He has spastic diplegic cerebral palsy. It mostly affects his legs. He drives with his hands. He and his dad installed a $450 hand control system in his Ford Contour in just a couple of hours. Wil took David Sommerstein for a demo to the gas station and the bank.  Go to full article

Free, Appropriate Public Education: Getting There Isn't Easy

Public schools are the crossroads where the community at large and people with disabilities meet. The ideal? Kids learn from each other about their differences and similarities; all reach their potential. Parents dreams are fulfilled. And the school budget passes with barely a ripple in the tax rate. But it isn't that easy. Martha Foley talks with Andrew Pulrang, of the North Country Center for Independent Living in Plattsburgh.  Go to full article
John and Aggie Pelletieri, his BOCES "1 on 1" aide
John and Aggie Pelletieri, his BOCES "1 on 1" aide

For Disabled Students, Public School A Challenge & Salvation

Public schools are playing a bigger role in the lives of people with disabilities. Federal law requires that schools provide children and young adults with a free and appropriate education until the age of 21. Sometimes that means a therapist helping a student for an hour each week with a speech problem. In rare cases, kids need full-time, one-on-one assistance, or even a residential program. In New York state, roughly a quarter of the average school district's budget now goes to helping students with special needs. With education budgets strained and local property taxes a subject of controversy, spending for disability programs is often controversial. But as Brian Mann reports, new resources and better teaching strategies are helping young people achieve goals that once would have been inconceivable.  Go to full article
SUNY Potsdam will officially dedicate the O'Shaughnessy Center for Assistive Technology on Friday at 4 p.m. in Satterlee Hall in memory of faculty member Tom O'Shaughnessy.
SUNY Potsdam will officially dedicate the O'Shaughnessy Center for Assistive Technology on Friday at 4 p.m. in Satterlee Hall in memory of faculty member Tom O'Shaughnessy.

SUNY Potsdam to Dedicate Center for Assistive Technology

The official dedication of the Thomas O'Shaughnessy Center for Assistive Technology at SUNY-Potsdam is Friday afternoon (4 pm) in Satterlee Hall. Tom O'Shaughnessy taught in the School of Education at Potsdam from 1979 until his death in 2002. He was well known for his expertise in assistive technology and his work with special education teachers and children in the North Country. The new center will provide special technology for students with physical and learning disabilities. Linda Reece is an Occupation Therapist for the St. Lawrence-Lewis BOCES. She spoke with Todd Moe.  Go to full article

At 44, Still Seeking Her Dream Job

Women with Turner's Syndrome--the disease affects only women--have a damaged X chromosome. Symptoms include infertility, depression and health problems, such as brittle bones and heart ailments. Rebecca Shaney lives in Watertown. She wasn't diagnosed with Turner's until she was 28. When she was 29, she got her master's degree in French. Rebecca is, in her own words, obsessed with French. She's always wanted to be a French teacher. She has taught after school and tutored and been a sub, but she's never landed a full time teaching job. Meanwhile she's cleaned offices, washed dishes, and cashiered. She's currently on disability for a broken hip. She lives well under the poverty line. Rebecca had another job interview this month; we gave her a tape recorder the week before. She brings us this audio diary.  Go to full article
Craig Young
Craig Young

Getting a Job: A Success Story

Up to 70% of disabled Americans of working age are unemployed. Two-thirds of those unemployed say they want to work. But barriers to employment include accessibility of worksites, under-education, and public misperceptions about how capable people with disabilities are. And employers don't have time to devote to extra training some people may need. Craig Young is a success story...he's 20 years old, and store manager at the Family Dollar in Gouverneur. He says he couldn't have imagined holding the job a year ago. Greg Warner has his story.  Go to full article

Commentary: Disabled, or "Just Older"?

Jeff Reifensnyder, of the Massena Independent Living Center, thinks dropping the distinction could benefit senior citizens,and the disabled community.  Go to full article

Growing Older: Disability or Inability?

It's something we all face - growing older. For many of us old age will mean diminished eyesight, hearing, memory and mobility. The U.S. is aging - fast. There are more people over 65 now than ever before, and the segment of population 85 and older is growing the fastest. A Georgia Tech study a few years ago found that the percentages of people with disabilities increases significantly with age - 14 percent by age 40, 30 percent at 60 and 46 percent at age 70. Maintaining independence is a tricky part of growing older. Independence is important to people, but it's not always easy with diminished abilities. And as Todd Moe reports, it's not always easy to talk about, either.  Go to full article

Preview: 22nd Annual Southwick Beach Run/Bike Event

Todd Moe talks with Susan Zabriskie, president of North Country Access Cycling. The group is organizing a bike, wheelchair and handcycle race in June in Jefferson county. North Country Access Cycling is a chapter of Disabled Sports USA.  Go to full article
Left to right: Andrew Pulrang, Kim Massaro, Kelly Wight, and Martha Foley
Left to right: Andrew Pulrang, Kim Massaro, Kelly Wight, and Martha Foley

Disability Matters Call-in

The first week of the new Disability Matters series, a year-long Sound Partners collaboration with North Country centers for independent living that explores disability issues and access to services in the region, culminated in this hour-long call-in program with guests Andrew Pulrang, executive director of the North Country Center for Independence; Kim Massaro, coordinator of school-to-work transition teams; and Kelly Wight, a community placement coordinator; and host Martha Foley. All fouteen feature stories that aired this week can be heard on the Disability Matters topic page, along with a growing selection of resources for those concerned with disability matters.  Go to full article

Electronic Voting, with Headphones

Yesterday, vendors of electronic voting machines peddled their wares to Board of Elections supervisors at their regional meeting in Syracuse. They're competing for a massive contract - one company's machines will be chosen to outfit poll stations around the state for the 2006 elections. Under the Help America Vote Act, the federal government has promised $220 million to buy the machines and train poll workers.

Lots of people are concerned with which machines state legislators choose to buy. They include people with disabilities, who traveled to Syracuse yesterday to test the machines for accessibility. Sue Morrow is a blind woman who lives in Watertown - she works at the Independent Living Center. She spoke to reporter Greg Warner last night after she got back. First she described how she votes now.  Go to full article

Preview: St. Lawrence NYSARC's Spring Showcase

The St. Lawrence NYSARC Community Players present Murder on the Menu, an original theatrical production, Saturday night (7 pm) at SUNY-Canton's Kingston Theatre. The players are individuals with developmental disabilities from all parts of St. Lawrence County. the evening will also include music, poetry and monologues. Todd Moe talks with Andrea and Michelle Quinell of St. Lawrence NYSARC about the debut production.  Go to full article

For Wounded Soldiers, Hand Cycling Therapeutic

More than 12,000 U.S. soldiers have been wounded since combat began in Iraq and Afghanistan. According to the Department of Defense, about half of them were injured severely enough to prevent their return to duty. When they return home, these soldiers face a double challenge. They have to cope with the mental trauma of war. And they have to reshape their lives to accommodate a new disability. As a part of our year-long series Disability Matters, David Sommerstein reports on an adaptive cycling program that helps amputees return to physical and mental fitness.  Go to full article

BOCES Cuts May Not Hurt Special Ed. Students

BOCES of Franklin, Essex and Hamilton counties will lay off nearly 30 special education teachers and teachers aids next year. The BOCES teaching staff provides support to kids with special needs in nine districts. As part of our ongoing series Disability Matters, Brian Mann spoke with Jan Fitzgerald about the cuts. She heads a statewide program based in Tupper Lake called Parent to Parent. Her son, John, is a student at Saranac Lake High School who receives one on one support from BOCES. Fitzgerald says she thinks special ed classes will see few actual changes with more teachers working directly for local districts.  Go to full article
Chuck Wright's Recycled Computer Clocks
Chuck Wright's Recycled Computer Clocks

Disability Matters: An Online Love Story

All this year we're reporting on people with disabilities in our series, Disability Matters. For so many of the people we've met, their computer has had a transforming affect on their lives. Studies support this: people with disabilities spend much more time on the internet than non-disabled people do. And they're far more likely to say that the internet has significantly improved their quality of life, kept them informed and connected to the outside world.
But people with disabilities are also less likely to be able to afford a computer. And currently, New York State will not pay for a computer unless specifically work or school-related. That wouldn't have helped Chuck Wright and Maureen Norcross.
Theirs a sort of online love story. They fell in love on a disability chatroom. Now they're together on eBay, as well. He makes clocks out of recycled computer parts, she carves and paints wood. They're part of a workshop at the St. Lawrence County Chamber of Commerce called the Northern Adirondack Trading Cooperative. The Cooperative is a finalist for a global award for microenterprise initiatives. This Saturday, the group is heading down to New York City for one of the largest one-day street fairs in the country.  Go to full article

Depot Theatre Launches Audio Described Plays

The Depot Theatre is doing something new--an audio described performance for the visually impaired. NCPR's Resident theatre critic Connie Meng spoke to Artistic Director Shami McCormick about the process.  Go to full article

Advocates Want Accessible Transportation

Lack of public transportation hits rural people with disabilities hard. In Essex County, advocates say the lack of wheel-chair accessible transportation violates the law.  Go to full article

Disability Matters Audio Diary: Michaela's Family, Part One

This year, North Country Public Radio is focusing on people and families who live with disabilities. This morning, we begin an audio diary series with the Hannons, a family in Saranac Lake. Kathy and Mike Hannon have two daughters, Rachel and Michaela. Twelve year old Michaela was born with spastic cerebral palsy.
In the weeks and months ahead, they'll be sharing their experiences, talking about the ways that Michaela's disability changes their daily lives. This first diary is narrated by Kathy Hannon, a school teacher who works in Lake Placid. We'll also hear from her daughter Michaela. Their audio diary was produced by Brian Mann.

Next Monday: Getting Michaela ready for a day at school.  Go to full article

Disability Matters: Finding Words for Michaela's Day at School

Every morning, families across the North Country get their kids ready for school. For children with disabilities and their parents, the ritual can be far more complicated than just eating breakfast and brushing teeth. As part of our yearlong series, Disability Matters, the Hannon family in Saranac Lake is keeping an audio diary about their life. Kathy and Mike Hannon's daughter Michaela was born prematurely with spastic cerebral palsy. She uses a wheelchair and her ability to speak is extremely limited. Kathy and Michaela take on the most important chore in getting ready for a school day: preparing to communicate with the outside world. Their audio diary was produced by Brian Mann.  Go to full article

Disability Matters: For Parents?Hope, Sadness, and Acceptance

For parents with severely disabled children, life can be a constant struggle with social service agencies, doctors, and schools. In this rural area, finding the best care for kids also often means expensive and exhausting travel. Kathy Hannon is a teacher. She lives in Saranac Lake. Her 12-year-old daughter Michaela suffers from spastic cerebral palsy. In this week's audio diary, Kathy describes a recent trip to see a specialist in Pittsburgh. She says parents like her make the journey looking for medical answers but also looking for hope.
The Hannons' audio diary series is produced by Brian Mann with technical help from Joel Hurd.  Go to full article

For Kids with Disabilities, Schools Offer Hope & Hurdles

Thousands of families in the North Country have school-age kids who live with disabilities, everything from dyslexia to muscular dystrophy to attention deficit. Public schools are a front-line resource, providing a remarkable range of services, therapies, and specialized education. Good programs can make all the difference, helping a child to reach a productive, engaged life. But navigating the bureaucracy and finding the best strategies for each child can be a daily struggle. Kathy Hannon is a special education teacher who lives in Saranac Lake and works in Lake Placid. Her daughter Michaela lives with spastic cerebral palsy. Michaela, who is twelve years old, uses a wheelchair and a voice machine that helps her to communicate. In this morning's installment of the Hannon's audio diary, they offer a glimpse of the ups and downs of the education system as seen from the inside.  Go to full article
Postcards to Greg from students
Postcards to Greg from students

In Inclusion Era, Self-Contained Classrooms Retain a Role

New York State has long been criticized by disability advocates and parents for pulling too many disabled students out of regular classrooms and putting them into self-contained "special ed." classrooms. There students learn in a closed and controlled setting with other students with disabilities. Recently the number of self-contained classrooms has dropped dramatically. State mandates have led a lot of districts to cut their self-contained classrooms and bring students into regular educational settings. But there is still a role for self-contained classrooms, and they're still the way many students with disabilities experience the school year. Gregory Warner visited a self-contained classroom in the Potsdam middle school. The class is taught and staffed by workers from BOCES. The students come from as far away as Madrid and Parishville.  Go to full article

Adirondack Park for People With Disabilities

A dedication ceremony was held yesterday in Long Lake for the first wilderness area in the Adirondacks designed to accommodate people with disabilities. International Paper has donated a nearly 16,000-acre conservation easement to the state. It will compromise the International Paper John Dillon Park, named for the paper company's now-retired chairman. As Chris Knight reports, the park is meant to provide its visitors with the therapeutic experience of the wilderness.  Go to full article

Alex's Story: Inclusion With Autism

Autism is a nureological disorder. It typically appears in the first 3 years of a child's life. People with autism typically have language difficulties and trouble relating to other people. They have an obsessive need for things to stay the same. Alex Smith is 15 years old. He's a sophmore at Canton high school. When he was in elementary school he had a one-on-one aide, an adult always by his side. But Canton is one school with a long history of inclusion, of involving students with disabilities as much as possible in regular ed classes. Alex's story is one of increasing independence.  Go to full article

Sorting Through Special Ed

This week, we've heard stories of students in special education in New York State--all different: inclusion, mainstreaming, self-contained. How does one student end up in general education classes, and another in a special classroom? Is there a right, or a wrong, way of special education? Andrew Pulrang is executive director of the Independent living Center in Plattsburgh. He is an advocate for people with disabilities. He has a physical disability himself. And he's got first hand experience of schools in New York, and Washington State. He spoke with Martha Foley.  Go to full article

Disability Education Pushed by Feds, Paid for by Locals

According to a state report issued this week, twelve percent of the students in New York's public schools are enrolled in special education programs. Children living with disabilities are expensive to educate. Their services often cost twice or even three times as much as a child in general education programs. Advocates here in the North Country say the pay-offs are worth it. Many children who might have been unproductive and unemployed are now learning important life and job skills. Some are able to go on to college. But even supporters of disability education programs agree that Federal support for local school districts is lagging behind. A new set of Federal mandates is set to go into effect this year. As Brian Mann reports, local taxpayers are likely to pick up the tab.  Go to full article
Wil Hansen
Wil Hansen

Disability Matters: The Sunshine School

Wil Hansen has spastic diplegic Cerebral Palsy. He walks with crutches, wears braces most of the time, and uses a wheelchair in places like shopping malls and airports and so on. When he was a pre-schooler, he entered the Sunshine School in San Diego. The students--all with disabilities--ranged in age from Pre School to high school. Some older kids attended the local community college. The school was a one-stop shop for education and support services. Kids received physical, speech and occupational therapy. California Crippled Children Association, as it was known then, operated medical clinics out of the school. In 1970 there was no standard policy for special ed. Though staff at the Sunshine may not have realized it, they were developing procedure, creating a foundation for many of the practices and mandates in place today. But according to Wil, that wasn't the most important thing about The Sunshine School.

Wil Hansen lives in Canton. He is publisher of Cerebralpress.com, an online news digest focusing on stories about living with disabilities.  Go to full article

Taking Disabilities to College

To learn more about how that transition continues on campus, David Sommerstein spoke with two mortuary science students at SUNY Canton. Lacy Galusha is from Moriah. She has mild learning disabilities. Working with numbers and lots of information at once are especially difficult. Ashley Yaffie is from the Rochester area. She gets anxiety and freezes when she takes tests. David asked them first to describe what high school was like for them. Lacy started.  Go to full article

Transition After School: Knowing Yourself

While children with disabilities are in special education, they're also preparing for what educators call "the transition" - what they'll do after they graduate from high school, or when they turn 21. By law, the transition process starts at age 12. School counselors ask the student what they want to do, what they like and don't like. The same questions are asked parents and teachers. By the time the student is 16, a written transition plan lays a roadmap for the child future schooling, job, and housing. David Sommerstein visited Alexandria Bay high school to see the transition process in action. At its best, transition does more than help students go to college or get a job. It's a carefully monitored path of self-discovery that teaches the student to know what kind of help they need and how to get it.  Go to full article

Amber's Diary: First Job after High School

In the first installment of our Disability Matters series we heard the story of Amber Triese. She was moving into a group home in Potsdam. Amber is 22 years old. She graduated from high school last year. She's cognitively impaired and legally blind. In high school she interned with Building Blocks, a pre-school program in Potsdam. A few months ago, they hired her to work part-time as a teacher's aide. She recorded this on-the-job audio diary for us.  Go to full article
10-year-olds Erin Allen and Sydney Freed became fast friends during "Fabulous Friends with Flying Fingers" rehearsals.
10-year-olds Erin Allen and Sydney Freed became fast friends during "Fabulous Friends with Flying Fingers" rehearsals.

A Show of Hands: Kids Learn Sign Language and Disability Awareness

Deaf theater has been around in grassroots and small-scale forms since the early 1900's, mostly with performances based out of deaf schools and cultural centers. The "Fabulous Friends with Flying Fingers" is a Glens Falls sign language entertainment group comprised of deaf, hard of hearing and hearing students from the southern Adirondacks and Saratoga regions. Over the last few years, the group has been busy entertaining audiences, young and old. As Todd Moe reports, for one family, it's enriched the life of their hearing-impaired child.  Go to full article

Are Schools Making the Special Ed Grade?

This week, we've thought a lot about special education. About mainstreaming and inclusion. About how schools and families struggle to fulfill the mandate of federal law: that all students must receive the best education possible, in the least restrictive setting possible. The pathways vary from student to student, school district to school district. It's hard to say this is right, that is wrong. But this IS school, in an era of standardized measurement, and accountability. Parallel to all the tests kids take is another set of measurements tracking how schools are doing. It's based on outcomes. How the clients did... the kids. Martha Foley spoke with Robert Shepherd, who's leading research into outcomes in New York State.  Go to full article

Rail Line a Labor of Love

The governor announced this week that state will spend $40 million on upgrading rail lines. A third of that money will go to the North Country--some for short connector lines. One of those is the Batten Kill, in Washington County. The Batten Kill will receive $1 million for track rehabilitation. When Ronald Crowd took over the Batten Kill 20 years ago, it was nearly dead. Now he and his six employees run 40,000 tons of feed, fertilizer and logs along the 35 miles of track. The Batten Kill still hasn't turned a profit. And it's not just the business that's a challenge. Ron Crowd contracted polio when he was two. He uses a wheelchair. As he told Gregory Warner, that's where owning his own train comes in very handy.  Go to full article

For Families With Disability, Help Network Means Better Life

This year, North Country Public Radio is talking with people and families who experience a wide range of disabilities. As part of our Disability Matters series, Kathy and Michaela Hannon have been keeping an audio diary about their lives in Saranac Lake. Kathy works as a special education teacher in Lake Placid. Michaela is twelve years old. She lives with spastic cerebral palsy and uses a wheelchair. This morning, Kathy talks about the daily support that can allow a family with disabilities to maintain a rich quality of life. Often, workers help with the most mundane chores.  Go to full article

Disability on the Farm

This week we're hearing audio diaries. Today's is a part of our year-long series Disability Matters, looking at the issues facing people with disabilities in the North Country. Ann Bennett and her husband, Brian, are organic farmers in Heuvelton. They sell chickens and eggs, vegetables and herbs under the name Bittersweet Farm. They have two children, 11-year-old Katherine and 8-year-old Carl. Ann has a form of muscular dystrophy and arthritis. Her condition has gotten worse in recent years. Before, she walked through the fields and gardens. Now she uses an electric wheelchair with big sturdy wheels to get around the farm. Ann prepared this audio diary about the transition.  Go to full article

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photo Disability Matters team
The Disability Matters team at a planning meeting. Seated, l-r:Wil Hansen, Canton, project information specialist; Andrew Pulrang, Plattsburgh ILC (Independent Living Center); Ellen Rocco, Martha Foley, Jeff Reifensnyder, Malone ILC; Jackie Sauter, Aileen Martin, Watertown ILC; standing: Todd Moe, David Sommerstein; not pictured: Brian Mann.

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