Let’s Talk! about changing the definition of autism

January 24, 2012 by cpehrson

picture of a face focusing on the lips

Rates of autism and related disorders like Asperger syndrome have increased dramatically since the early 1980s. Many researchers suspect that these numbers are rising because of vagueness in the current criteria, which are now under review by an expert panel.

Researchers at Yale University found recently that putting into place the proposed changes in the definition of autism could exclude about three-quarters (up to a million) of those now diagnosed with milder forms of autism called Asperger syndrome.  This could potentially reduce their access to the health, educational, and social services they need.

The proposed revision to the American Psychiatric Association’s definition would take effect in 2013, if approved.

What do you think about these proposed changes?

That is our latest Let’s Talk! topic today.  Tell us what you think about the following questions:

What are the benefits of having a narrower definition for autism?

Do you think having a narrower definition of autism would exclude many from receiving services they need and prevent them from reaching their potential?

Do you think having a narrower definition could permit more specific patient care and treatment to those who need it most?

If your life or your child’s may change if autism is redefined, how are you getting your family ready?

Do you have any advice for families who may face these changes?

The Let’s Talk! blog gives readers a chance to let us know how you feel about the issues and concerns that affect the lives of people with disabilities and their families and to hear what others think.

Please let us know of other topics that you would like to talk about.

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Disability film screening and panel provoked discussion

January 23, 2012 by JoLynne Lyon

Classroom with people in desks in semi-circles faceing a panel of 6 people with disabilities and one moderator; slide on wall says "Lives Worth Living" behind the panel

at the film and panel discussion in the Merrill-Cazier Library

On Friday, a panel sponsored by the Center for Persons with Disabilities took a look back at the events that marked the history America’s largest minority group: one that has fought its own battles for independence, acceptance and equality.

Attendees started by viewing the documentary Lives Worth Living, produced by the PBS series Independent Lens.The film traces some of the significant events in disability and advocacy. Its images were dramatic, from the obvious neglect at institutions for people with intellectual disabilities to a stair-crawling demonstration up the steps of the US Capitol by people who couldn’t enter the building in their wheelchairs.

After the film, the panel answered questions on the future for people with disabilities. The event ended with a reception by the poster exhibit in the Special Collections area of the Merrill-Cazier library. Here’s what we heard:

Andy Curry, Chair for the Utah Healthcare Subcommittee: Though the ADA passed, it wasn’t instantly embraced, even by university campuses. He began using a wheelchair at the time it passed, and a year or two later he began scouting out college campuses. “It was clear that some of these universities didn’t even want me there.” After graduating from New Mexico state he began the job hunt and found he could not physically enter the buildings of some prospective employers. “If they’re not accessible, they’re not going to hire you.”

picture of panelist Keli Babcock, beautiful smile, long dark hair, sitting in a power chair

Panelist Keli Babcock

Keli Babcock, education coordinator and peer mentor at the Tri-County Independent Living Center in Odgen, Utah: “With all this accessibility that’s slowly coming about, the result is obvious. People with disabilities are able to get out more and attend universities and get jobs… People are seeing us, where back years ago they did not see people with disabilities out in the community. … I think that’s big. There’s still a long way to go but we’ve come a long way… It’s exciting to see the acceptance that’s taking place.”

Panelist Tom Brownlee, self-advocate and chair of the CPD’s consumer advisory council: “Things are getting better, we’re getting there but there’s still a lot of advocating work to do… Everyone has a right to have their dreams come true.”

Sachin Pavithran, interim director of the Utah Assistive Technology Program at the CPD: “We have really a long ways to go to get equal access which we all deserve. … Everything is on the web now. A lot of information is not available to someone who is blind because its not accessible.”

Likewise, he said, many appliances now have touch screens that can’t be operated by people who are blind. “It is possible to make it accessible, but manufacturers don’t care about it. … It’s not just a luxury. If you can’t cook, if you can’t wash your clothes, how are you going to go to work?”

Scott Ferre, Vocational Rehabilitation Counselor for the Deaf and Hard of Hearing in Salt Lake County, commented on how important it was when the students of Gallaudet University–a university that had been established for people who were deaf and hard of hearing. Since its inception it had always had a hearing president, but in 1988 students demanded a university president who would better represent them. The protest helped them to be recognized as people, he said, and they realized they shouldn’t just “sit down and shut up.”

Andrea Pitts, who currently serves on the Utah Independent Living Council, offered this advice to people who are working to make good changes: “Keep on plugging.” The beginning stages are often more discouraging than the middle and end stages.

Tina Peck, who works for the Disability Resource Center at USU:  “For me, the fact that buildings are accessible and they did that for me… it really hits home for me because before any of this, I wouldn’t have been able to go to school. I just finished my first semester of my masters degree.”

Moderator and CPD Training and Development Specialist Jeff Sheen issued a challenge to the attendees.  “We want you to take this information and go out and change the world.” Start by striking the “r-word” from your conversation, he said, and gently remind others that it’s a hurtful word.

For more photos of the event, visit our Facebook page.

Dr. Marvin Fifleld and his wife looking at some of the disability history panels displayed on the wall

Former CPD director Marvin Fifield with his wife, Diane, at the exhibit

 

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Mental Health Matters

January 19, 2012 by cpehrson

Recent data from the Center for Mental Health Services indicates that 1 in 4 people will experience a serious mental illness at some point in their life. Unfortunately,  people with mental illness are at greater risk of experiencing stigma from those who don’t fully understand the condition.

Stigma is when someone judges you based on a single, personal trait,  such as someone making a negative remark about your mental illness or your treatment.  It may be subtle, such as someone assuming you could be unstable, violent or dangerous because you have a mental health condition.  Some of the harmful effects of stigma can include a lack of understanding by family, friends, or colleagues; discrimination at work or school; bullying or harassment; or inadequate health insurance coverage.

One of the ways to deal with these stigmas is to speak out against it. Express your opinions at events, in letters to the editor or on the Internet. It can help instill courage in others facing similar challenges and educate the public about mental illness.

To this end, the Utah Disability Law Center is launching a multimedia anti-stigma campaign over the coming months that asks people to “rethink mental illness.”  The campaign will be seen and heard on local television and radio, as well as appear on outdoor billboards and in print.

On February 8, 2012, there is a great opportunity to learn about how to become a strong advocate and learn how to speak with Utah legislators about mental health issues.  This event is sponsored by the National Alliance on Mental Health and the Utah Disability Law Center.

We hope that you will take an opportunity to learn more about mental health issues and join in advocating for people living with mental illness and their families.

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CPD Legacy Story: Laura Oppermann

January 18, 2012 by cpehrson

This CPD Legacy Story is written by Laura Oppermann and is about the support she has received from CPD programs through the years for her son, Christoph.  Laura is the parent partner at Budge Clinic Pediatrics Medical Home, coordinates Medical Home Care with Intermountain Healthcare, and is currently a service coordinator for the CPD’s Autism Spectrum Disorder (ASD) Diagnostic Clinic. 

 

Laura, long blonde hair with wonderful smile, hugging her son, Chris, little boy in overalls

Laura with Chris

Moving to a new place with a young child with severe disabilities and on-going medical needs can be daunting.

We decided to move from Germany to Logan when our son, Christoph, was two and a half.  His health was very fragile.  Surgeries, evaluations, treatments, as well as emergency ambulance rides were part of our routine. Our beautiful boy had significant needs and we needed to connect with physicians and early interventionists immediately upon arrival. We would have a 6-month waiting period for insurance, and I didn’t know how a major pre-existing condition might impact our coverage or ability to qualify. Needless to say, we were nervous.

A family member suggested I call the Center for Persons with Disabilities. I remember connecting with an informed, compassionate woman in the Up to 3 Program on the phone. I was so relieved to find someone who understood and could answer my questions! She let me know that following an evaluation, my son could receive home therapy services through their program. She listened to my concerns about getting insurance and directed me to Health and Human Services to ask about an insurance program I had never heard of before, called Medicaid.

Soon after we arrived in Logan, I met our service coordinator, Carol (Winn), who then introduced me to PT, OT and speech therapists. They came to our home to observe, listen and teach me as we worked to come up with strategies to help my son progress.  They connected us with The Utah School for the Deaf and Blind and we began to receive vision services, and eventually (deafblind) intervenor services as well.

Everyone was patient with us during multiple hospitalizations and made sure services were as continuous as possible. Preschool came up right away, and Chris came to the CPD to attend the transition classroom for a couple of months. This was extremely helpful, as, in my eyes, he was too young, small, and fragile to leave home and I was terrified to put him on a bus for an hour ride to Smithfield to go to school for the morning. His experience in the transition classroom helped ease me into this big step and understand how much he would benefit from school.

In addition to Up to 3, Chris also received great services through the feeding clinic (at the CPD); we borrowed books about disabilities from the lending library; and received consultation and help from the Assistive Technology Lab.

Throughout all our experiences, staff listened carefully to what we had to say. They encouraged us in our efforts and, most importantly, showed great respect and compassion to all members of our family -especially Christoph. They were considerate of our time and priorities and created an environment of fun, not guilt or obligation. We were able to borrow equipment, try it out, and then develop devices specific for my son’s needs.

Through connections made at the CPD, I became involved in a local parent support group called the Parent Connection which pushed Logan Regional Hospital to create the pediatric rehabilitation unit, Cache Kids, so families of children over 3 didn’t have to leave the valley for therapy. I also sat on the CPD’s Consumer Advisory Board for a while and got involved with Utah’s Family to Family support network. This led to other connections with Family Voices, Sparkle, IDASL, One Application, URLEND and Medical Home.

I have been involved with Medical Home for the past eight years, working with families and their pediatricians to make sure families receive compassionate, coordinated care and access to the supports they need to successfully care for their children with disabilities.

Now I’m working as service coordinator in the ASD Diagnostic Clinic and plan to continue my association with the CPD and its staff indefinitely.  I  appreciate how my experiences with my son and  the wonderful people who surrounded him and accepted him have shaped the person I have become.

Christoph passed away September 18, 2008.

Little boy sitting on his mother's lap outside hugging and laughing

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Human rights celebrated on USU campus

January 16, 2012 by cpehrson

What better time to review the history of America’s disability rights movement than during the week of Human Rights Day, a nationally recognized holiday combined with Martin Luther King’s Day.

Since before the Civil War, the fight for equal access and opportunity for the disabled in this country has been fought by people who demanded to be treated as full and dignified human beings and citizens.

The PBS film, Lives Worth Living, traces the progress of these pioneers who realized that in order to change the world they needed to work together. This film is an oral history, told by the movement’s mythical heroes themselves, and illustrated through the use of rare archival footage. Thanks to their efforts, tens of millions of people’s lives have been changed.

A screening of Lives Worth Living, co-sponsored by the Center for Persons with Disabilities and the USU Disability Resource Center, will be held on Friday, January 20th from 1-4 pm in room 154 of the USU Merrill-Cazier Library.

The screening will be followed by a panel discussion on “The Disability Rights Movement: Past, Present, and Future.”  Panel members include disability advocates from around the state:

Sachin Pavithran holds a Masters degree in Vocational Rehabilitation Counseling and is currently the interim director of the Utah Assistive Technology Program at the CPD.  Sachin is a strong advocate for persons with disabilities and serves on several national boards, including the Research and Development Committee for the National Federation of the Blind.

Andrea Pitts has been involved with various advocacy projects at the CPD for several years.  She has most recently worked with the Becoming Leaders for Tomorrow focus group, promoting independence and healthy lifestyles for individuals with disabilities. Andrea holds a Masters degree in Social Work and currently serves on the Utah Independent Living Council.  She recently accepted a position as a Vocational Rehabilitation Counselor in Ogden, Utah.

Kelie Babcock has a Bachelor’s degree in Social Work and works as an education coordinator and peer mentor at the Tri-County Independent Living Center in Odgen, Utah, teaching classes to others who have disabilities.  She was the 2010 Ms. Wheelchair Utah and is a motivational speaker, encouraging others to “keep on rollin'” when life gets hard.

Tom Brownlee has been a strong self-advocate for many years. Tom serves on several boards, councils, and committees and is a local and national speaker, advocating for the rights of individuals with disabilities. He is the current Chair of the CPD Consumer Advisory Council.

Tina Peck has worked with people with disabilities for many years and is a strong self advocate and  advocates for all people with disabilities.  She has a Bachelor’s degree in Social Work and is currently working on her Master’s degree.  Tina has worked for the Disability Resource Center at USU for seven years.

Scott Ferre learned American Sign Language after serving a British Sign Language mission, the first deaf culture exposure that he had ever experienced. Scott holds degrees in Psychology and School Psychology and currently works as a Vocational Rehabilitation Counselor for the Deaf and Hard of Hearing in Salt Lake County. 

Andy Curry has worked in the field of disability since for many years and has considerable experience advocating for both federal and state legislation promoting civil rights, services, and independent living programs for persons with disabilities.  Currently, Andy is the Chair for the Utah Healthcare Subcommittee, a member of the Technology, Housing, and Transportation Committees, and is the State coordinator for the National Council on Independently Living (NCIL). He also serves on several other boards and committees at the local, state, and national level, all surrounding disability issues.  Andy has been the Executive Director of the Tri-County Independent Living Center in Ogden, Utah since 2004.

 

 

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