CAC Corner: The future of the advocacy movement

November 13, 2013 by Sue Reeves

Note from Gordon Richins, CPD Consumer Liason: The following article was written by Alison Lozano, a friend of mine and the Executive Director of the New Jersey Council on Developmental Disabilities. She addresses an issue I have also noticed as I advocate within the state of Utah and on a national level. Read her article and decide if you agree or disagree when she states, “There is definitely a graying of the disability advocacy community.” We as advocates within the disability community pride ourselves in our ability to get involved and help bring about a change in the quality of life for individuals with disabilities. I would like to hear back from others as to whether you agree or disagree, or possibly just send me thoughts or suggestions that you have on addressing the issue of the graying of the disability advocacy community. Feel free to call or e-mail me at 435-797-2832 or gordon.richins@usu.edu .

The future of the disability advocacy movement

By Alison Lozano, Ph.D., MPA

woman with walker

Aging self-advocates will need to step aside to allow young people to assume leadership positions in self-advocacy.

Those of us who are parents, self-advocates and professionals in the disability advocacy community attend many conferences and meetings per year. If you sit at the back of the room it is interesting to note how many bald and grey heads there are between you and the podium. Your conclusion would have to be that there is definitely a graying of the disability advocacy community.

Many of us became involved with the disability community in the 1970’s and 1980’s when we had to work hard to bring people with intellectual and developmental disabilities out of the shadows and into the mainstream of society. In many respects we have been very successful–we have downsized many large institutions and visibility for disability issues has become fairly common. However, we still have a long way to go for individuals with developmental disabilities to truly be part of their communities and society in general. And this is the very reason we have to increase our efforts to support and train those who come behind us to be strong and effective advocates.

I would suggest the best people for this job are the self-advocates themselves. It is of great importance that we invest in the training and strengthening of self-advocates to carry the mantle of the disability advocacy movement. Even those of us who are parents do not understand the issues that affect the lives of those who live with developmental disabilities. Parents and professionals are so often occupied with caring, protecting and nurturing that we lose sight of the civil rights and quality-of-life issues that are important in everyone’s lives.

Therefore, we have to support the development of skills in younger self-advocates so they can advocate for themselves and their peers.  We need to make sure there are training opportunities in place so they can learn and nurture their leadership skills. And, those of us who have been advocates for a while, those of us who are graying, need to step back and let them take the lead. For many of us it is hard, because, of course, we know best. But, the only way they will learn is by doing. If they stumble along the way, or do things differently from how we would do it, then we must endeavor to let them do it their own way.

At the New Jersey Council on Developmental Disabilities, we have a Youth Leadership program that focuses on teaching youth to advocate for themselves. These young people are the future of the movement and we need to support them to be the new disability advocacy leaders when those of us with the balding and graying heads take to our rocking chairs.

A look at Participatory Action Research

November 6, 2013 by Sue Reeves

Image of people in class

IDASL class members learn more about Participatory Action Research.

Participatory Action Research is a phrase applied to a method of research in which the test subjects are also involved as co-researchers.

“Participatory Action Research involves everybody in the process at all levels,” said Jeanie Peck, one of four instructors in the Interdisciplinary Disability Awareness and Service Learning class at Utah State University’s Center for Persons with Disabilities. PAR has been used extensively in the class.

“IDASL has changed significantly since it started in 2001,” Peck said. “Things have evolved because of individual feedback from stakeholders over the years.” The class used to be more academic, while its current focus is more on advocacy and awareness.

In the PAR model, client-participants are part of the issue and part of the solution. Stakeholders in CPD PAR research include people with disabilities, their family members, agencies, decision makers and others who bring an outside perspective.

“All individuals that have a stake in the systems that are being changed have direct and ongoing input into the changes,” said Alma Burgess, another instructor. “They are all experts from their own perspective.”

PAR focuses on problem-solving to create knowledge through action.

“Only by doing can you learn what does and doesn’t work,” Burgess said. Actions are researched, changed where needed and researched again. Research is the critical reflection of an action which generates knowledge.

A typical PAR cycle involves four steps: taking stock, setting goals, developing strategy and documenting the process.

When taking stock of an issue, researchers ask questions like where do we start, what has been done before, what needs to be done differently, are there new priorities or issues, what are the different perspectives and how to best utilize the perspectives of the group.

The goal-setting step determines what the researchers want to accomplish, and strategies detail what needs to be done to accomplish that goal, who is going to do what and when.

The documentation process allows researchers to determine if the strategies are successful.

CVTD–bringing communities together

November 4, 2013 by Sue Reeves

By Gordon Richins, CPD Consumer Liason and OPTIONS for Independence Board President

(Reprinted from the Nov./Dec. Options newsletter)

Three people waiting for the bus.

The Cache Valley Transit District’s fare-free bus service is a great transportation solution, especially for people with disabilities.

As a regular user of Cache Valley Transit District fare-free services, I generally utilize the fixed route services. I do this by personal choice and encourage other individuals with disabilities who use power chairs and/or manual chairs to utilize the fixed route services, for two reasons:   1) the buses are easy on, easy off and you are buckled down for safety reasons, and 2) the fixed route services run daily with the exception of Sundays and some holidays. Buses travel throughout Logan and parts of Cache County.  The CVTD web site  is where you can go to get information on route training materials to utilize the bus, etc.

When necessary, I also utilize the Call-A-Ride curb-to-curb services. However, for 99 percent of my trips, I choose not to utilize Call-A-Ride, preferring the fixed route bus service instead. The convenience and time savings I gain while using the fixed route system allows me to greatly enhance my quality of life because of the additional opportunities within the community available to me throughout the year. I often hear from friends, “I’m tired of being home all the time.”  I don’t feel sorry for them because with our bus services there is plenty to do in Logan. I know trying something new is scary, but riding fixed route buses using the bus ramp is not as scary as the lift system used by Call-A-Ride.  I personally don’t like the sensation of being lifted up in the air when I can easily roll on and off any one of the fixed route buses.

I also believe in personal choice and understand why individuals may choose not to use the fixed route services. I would like to encourage all individuals who use power chairs and/or manual chairs to make it a goal to attend at least three of the following Community Activities during the upcoming year and to also visit three or more community businesses by using the fixed route bus system. After three trips utilizing fixed route, you too will see the improved quality of life you will gain as you access our community on a regular basis. I am available to answer questions from a consumer’s perspective and user of the bus services. Please call me at (435) 797-2832 or email me at Gordon.Richins@usu.edu. If you are still nervous about using the fixed route bus service you may contact OPTIONS for personal instruction and assistance.

The following community activities are accessible to individuals with disabilities by riding the fixed route and/or Call-A-Ride buses. This is just a small sample of what will be available to you in 2014.

–Earth Day, April 2014.

–Farmer’s Market at Logan’s Willow Park, Saturdays, mid-May thru Oct 2014.

–Summerfest, downtown Logan, June 2014.

–Art on the  Lawn, North Logan, Saturday, June 28, 2014, 10 to 6 p.m.

–Summer Tabernacle Concert Series, first week of June through second week of August 2014, weekdays at noon.

–Cache County Fair, County Fair Park, August 2014.

–Hispanic Health Fair, Willow Park, September 2014.

–USU Homecoming Parade, downtown Logan, September 2014.

–Pumpkin Walk, North Logan, October 2014.

Don’t stay home when there are so many activities you can participate in simply by boarding a CVTD bus!

CPD clinic offers interdisciplinary evaluation of autism

November 1, 2013 by Sue Reeves

Image of child and adult

Graduate student Merrill Jones conducts an assessment for the ASD clinic.

Often, the diagnosis of autism comes from a single professional—a psychologist, a medical doctor, a social worker—and parents are left with that diagnosis, but no clue about what to do next. The Autism Spectrum Disorder (ASD) Evaluation Clinic at Utah State University’s Center for Persons with Disabilities offers interdisciplinary evaluations of children and a comprehensive list of resources to parents.

“We realized that one of the complaints of parents of kids with ASD is that they have to go six different places to get help,” said clinical psychologist Marty Toohill. “We asked, ‘Can we do this under one roof?’”

Sue Olsen, CPD Director of Exemplary Services and the clinic’s administrator, said that in addition to the “gold standards” of autism testing—the Autism Developmental Inventory (ADI) and the Autism Developmental Observation Schedule (ADOS)—the clinic evaluation team also conducts speech/language evaluations, occupational therapy evaluations including sensory processing and overall motor development, and medical evaluations through the CPD Biomedical Division to determine if there are any genetic or other health reasons that can contribute to the diagnosis.

“We used the best practices from each discipline to build the clinic,” said Vicki Simonsmeier, assistant clinical professor in USU’s Communication Disorders and Deaf Education department. She coordinates speech-language evaluations and, with Toohill, coordinates the clinic’s operations.

The ADI, an 80-page scripted interview that can take as long as three hours to complete, is often the first experience parents have with the clinic, said nurse practitioner George Wootton. He and Simonsmeier each administer the ADI. Toohill administers the ADOS and cognitive testing, which includes direct observation of the children as they play and interact with others.

Pediatric occupational therapist Ryan Winn also observes and engages in pretend play to determine how a child responds to sight, sound, touch and movement. Dennis Odell is the director of medical services and co-director of the CPD’s Biomedical Division, and is in private clinical practice in pediatrics. In the autism clinic, Odell performs the health evaluation and developmental screen, looking for diagnostic signs and symptoms of autism and its associated problems.

In many clinics, the children are seen by one person who administers one test, Simonsmeier said.

“We really feel they are best evaluated by a group of professionals … Our evaluation takes two days, so everyone sees the child on multiple occasions,” she said. “We see them at their best and we see the things they struggle with.”

Fees for a clinic evaluation are assessed on a tiered, income-based scale, Simonsmeier said. The waiting list for an evaluation is shorter than at many clinics, she said, and encouraged parents who have concerns about their child to call for more information.

After all of the evaluations have been completed, Toohill and Simonsmeier meet to discuss and work through the findings, prioritizing interventions according to the child’s needs. They then meet with the family in a feedback session to provide the diagnosis and make recommendations for the treatment and education of the child.

The reports generated by the interdisciplinary team are often more than 20 pages long, and are written without a lot of medical and academic phrases that can be confusing. In addition to the extensive report, the clinic maintains a list of community resources so parents have a better idea of what their next steps might be.

For more information, call the CPD at (435) 797-1981.