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Andrea Stepp talked about her grandson who has cerebral palsy during the Heaven Sent Support Group question-and-answer session with of a panel of parents who have children or family members with special needs, during the Pathway to Empowerment: A Disability Awareness Series Conference.

Disabilities Awareness Conference Highlights Community Services

By Tasha Silverhorn
Au-Authm Action News

On Tuesday, June 21, the Salt River Pima-Maricopa Indian Community Special Needs Resources Program held Pathway to Empowerment: A Disability Awareness Series Conference for all Community members to learn about Community programs and outside resources to help those with disabilities or special needs.

Community member and Disability Board member Eric Schurz was the keynote speaker. Schurz spoke about his parents, who were both deaf, and how he and his siblings learned sign language to communicate with them.

“It was rough growing up, because we grew up fighting,” said Schurz, “fighting to defend our parents from people, including [members of] our own family, who would make fun of them and us because they were deaf.”

Schurz remembered the dances his dad would have with friends he went to school with at the Arizona School for the Deaf and Blind.

“They would [dance with the] music blasting, and we would wonder how they knew when to dance and why they had music if they couldn’t hear it. But they could ‘feel’ the sound and the vibrations of the music,” said Schurz. Conversations were also interesting, because “You knew when my dad and his friends would be in a good conversation because their hands would be flying around in the air.”

Schurz explained that his daughter also has a disability that causes her to go into seizures if she consumes more than 10 grams of fat a day. He said that even though he grew up with parents with disabilities, it was a new awareness when he and his wife found out about their daughter. Today, they have to make sure their daughter eats the correct diet.

After Schurz’s presentation, the conference continued with information to help those with disabilities or special needs, such as the Disability Help Center, which helps people receive Social Security Disability, Supplemental Security Income (SSI) and Veteran’s Disability Benefits (www.ssdhelpcenter.org).

Programs Assist With Special Needs
There are also other services, such as the Arizona Technology Access Program (AzTAP) and the Office for Children with Special Health Care Needs, which educates families, care providers and child-serving agencies about the eligibility rules and process for accessing appropriate services for children and youth with special healthcare needs.

Family Support Specialist Carrie Swearengin from Raising Special Kids presented information helpful to families of children with disabilities or special health needs in Arizona. She talked about her own experience with a family member who has a disability. Her brother Scott was misdiagnosed throughout his adulthood, and with that came wrong medications, with side effects leading to depression and multiple suicide attempts. He was able to receive the correct medication, and today lives a healthy life.

Raising Special Kids supports and encourages families on the challenging journey of raising children with disabilities and special health needs, providing comprehensive family resource centers, parent training and information centers, family-to-family health information centers, and a number of workshops in the areas of special education, health systems, family support and advocacy. For more information, visit www.raisingspecialkids.org.

The Coalition Outreach Information Network (C.O.I.N.) and SRPMIC Coalition were among the Community groups whose representatives gave a presentation at the conference.

Karen James, a member of C.O.I.N., talked about her involvement as a member and as a grandparent of a child with a disability.

“I have grandchildren that go to the VAII clubhouse; my grandson, who is three years old, has a disability and he doesn’t talk. I talked to Rob Hickem, youth development specialist at VAII, and he works with my other grandchildren to [help them] understand why their brother doesn’t talk,” said James. “He works with my grandson, teaching him and trying to get him to talk. The VAII clubhouse (where C.O.I.N. and the SRPMIC Coalition are based) is not just for the children from VAII, but for everybody, and [they] take [the children] on different outings.”

“C.O.I.N. has been a big help and has taught me a lot,” explained James. “We have the opportunities to [attend] disabilities conferences to see what’s out there for people with disabilities, and it doesn’t have to stop here at the Community. We’re also entitled to the programs that are outside of the Community. That’s one of the things that I found out, and I am grateful that I have the opportunity to [learn this information and come back to the Community to share it].”

Salt River Coalition History
Salt River Coalition President James Butler gave a brief history of the Salt River Coalition.

“The coalition came about through homeowners who were having problems with the Housing Department and decided to do something,” Butler said. Working with guidance from Social Worker I Rudy Buchanan, they started the Coalition,” said Butler. “By coming together, uniting in order to make some changes in the houses in VAII, they were able to achieve some things that they could not do by themselves. That spirit is still being carried on by this coalition. One of our main goals is to pull people together to get issues dealt with; today’s conference is a spinoff of that.

“We have children with disabilities that are drug and alcohol related—emotional disabilities, employment disabilities and housing disabilities,” explained Butler.
The SRPMIC Tribal Council put together a Disabilities Focus Group, but little has been accomplished in several years, said Butler. So Community members started working on their own to gather information and get things done.

“After [the Disabilities Focus Group] failed to come up with any information after being in existence for over three years, we took them the information that these groups gathered, and [the Disabilities Awareness Conference] is an end result to that,” said Butler. “Today’s conference came out of a united front of a group of people gathering together saying ‘Yes, we have a need.’”

The old O’odham way of taking care of your own family and your own responsibilities is fine, but sometimes it helps everyone when people can come together and share information, Butler said.

“We are a family, a Community, a unique population, and we have to take care of ourselves and unite and [be able to say] ‘Yes, I do have a family member who needs a wheelchair, I do have a family member who needs a hearing aid.’ We need to come and utilize the services that are provided for those with disabilities, because they deserve it.”

Heaven Sent Support Group
The Heaven Sent Support Group held a question-and-answer session with of a panel of parents who have children or family members with special needs. The group was formed in 2003 to provide support to parents, families and caregivers of those with special needs and/or disabilities.

The group was formed after Karen Schurz’s grandson Zerion was diagnosed with autism at age 4. Today Zerion is 12-years-old and will be starting junior high next year. During the conference, Zerion’s parents, Kisto and Raeann Brown, took an emotional ride reliving the time when they first noticed Zerion was different and was diagnosed as autistic.

The Browns were in tears as they answered the question, “What was one of the highlights and achievements your child has made that sticks out in your minds?”
“Our son didn’t start talking ’til he was five; we wanted him to talk so bad, because he wouldn’t say anything,” said Raeann. “I would be so thankful if he would just talk, even if he just said ‘no.’ Well, his first word was ‘no.’ We cried and made him say it over and over. It was really something to hear your child talk, especially after you thought it would never happen, after doctors told us he wouldn’t. He was signing first, and we all learned the basics of sign language. It was hard, but it was something when he started to talk. I think our whole family celebrated forever.”

“Seeing what my friends and my son and daughter-in-law have gone through, [I know] that we are going to be blessed with our children who are sent to us; we have the knowledge and power that we can learn from them,” explained Schurz. “They teach us so much.”

The Heaven Sent support group meets at Schurz’s house on the last Saturday of the month. For more information, call her at (480) 226-0858.

The conference continued with presentations by the SRPMIC Life Enhancement and Resources Network (LEARN); Legal Services, on guardian ad litem and the guardianship process; and the Special Needs Resources Program.

For more information about the Pathway to Empowerment: A Disability Awareness Series Conference, or special needs and/or disability programs, contact the Special Needs Resources Program at (480) 362-7844 or check out the Web site at www.srpmic-nsn.gov/community/specialneeds.


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