This CAC Corner blog is brought to us by Robin Savage, a CPD Consumer Advisory Council self-advocate member.  She and her husband, Blake, have been members of the CAC for several years.  You will never see Robin without a bright smile on her face and a cheery word to say.  She and her husband live in Hyrum, Utah.

By Robin Savage as told to Connie Pehrson

Hyrum, Utah is a wonderful place to live….if you have a car!  It is 8 miles from Logan, and that creates a problem for residents who don’t drive, like Robin Savage and her husband, Blake.

They don’t have a problem getting around in Hyrum because they can walk to many of the places they need to go.  Blake can walk to the middle school where he is a custodian, and Robin can walk to most of the schools that she works in as a substitute lunch assistant.  They walk to the library and to their church.  A lot of their family is within walking distance; some live just next door.

But when they have business in Logan such as medical appointments, meetings, or just want to go shopping, they have to rely on family or friends to drive them in.

That is, until they discovered the Cache Valley Transit District (CVTD) bus system!

Being independent is very important to Robin and Blake.  They are proud of their thriving greenhouse business and like to be able to take care of themselves.  When the CVTD South route started up several years ago they were excited to take advantage of it.

Now they use the bus once or twice a week to get into Logan.  Sometimes their family will drive them in and drop them off at the Transit Center and they can go wherever they need to by themselves. Then they can ride the bus back to Hyrum.

Not only does the CVTD give the Savages independence, but it is FREE!

 Public transportation can be a lifeline for a person with a disability or a senior citizen. Special needs/accessible transportation is an important ingredient to being independent.  Without transportation options, some people might otherwise be virtually trapped in their homes or forced to lead much less independent lives.

Utah provides several transportation options for people with physical or mental disabilities.  Many counties in Utah have a paratransit service that can be accessed by eligible individuals.  Local Independent Living Centers (ILC) provide transportation assistance when needed. Utah 2-1-1 connects people with important health and human services programs such as transportation throughout the communities of Utah.

[NOTE: CVTD South buses come to Hyrum regularly every week day  at a variety of times and also has limited runs on Saturday.  CVTD does not run on Sundays.

The CVTD also provides a paratransit bus service through Call-A-Ride; it is for people with disabilities who have been certified as functionally unable to use the fixed route buses.  The paratransit service can be reserved by contacting the Transit District office.]

This month’s CAC Corner Blog voices the concerns of the CPD’s Consumer Advisory Council Family Representative  Charlotte Spencer.

By Charlotte Spencer & Connie Pehrson

Parents of children with disabilities too often hear the discouraging words  “Sorry, you don’t qualify for services.”  “Sorry we don’t have the money in our budget right now to help you.”

It is frustrating when I receive the annual DSPD (Division for Services for People with Disabilities) questionnaire asking if the requested services are still needed for my daughter and am told that she is still on the “eternal” waiting list for services and they are still not available.  Of course she still needs these services!  Does the person with assistive technology suddenly not need it anymore?  Does the person who is wheelchair bound magically not require a new chair after so many years of use?

When we hear of the aged widow who struggles to live independently because of her “fixed income,” our hearts go out to her.  When we learn that a young family is struggling because of the loss of a job, we may cry for them and be grateful inside that we are not that bad off.  When we learn of the struggles that people with disabilities have, do we hear them?

When did the words “budget,” “funds,” or even the phrase “Sorry, we can’t help you right now!” get to be such ugly words that just make you anxiously hold your breath as you hope you won’t hear them, but you cringe anyway when you do?  I miss the old days where your child or young adult qualified for services because that is what is required through the school district–you might have to fight a little for it, but it can be obtained.  It is a harsh reality when those days are over and the “Sorrys” are coming from higher up.

During the 2011 Utah Legislative Session, legislators showed that they had heard many of the concerns of people with disabilities and their families.  More funds were appropriated for those on the seemingly never ending waiting lists for services.

Our thanks goes out to them.  Perhaps many of us won’t hear “Sorry, there is no money for those services right now” this year.

There is probably not a more enthusiastic basketball fan in all of Cache Valley than the CPD’s newest and youngest Consumer Advisory Council self-advocate member, Ben Ballam.

Ben’s love of the game has changed the lives of several of his high school classmates who are “taking their game to a whole new level on Saturday afternoons” when they meet with Ben to play wheelchair basketball.

Ben, who was born with spina bifida, has been playing basketball from his wheelchair since he was a young child. His passion for the game has led him to the Logan High School gym where his enthusiasm has inspired the Grizzlies varsity team to play their hardest– just because he was there.  In turn, they have volunteered to come and play Ben’s kind of basketball with him, and on his level…”a way tough” way to play basketball, says the LHS varsity basketball coach Logan Brown.

The Logan Herald Journal has covered Ben’s love of basketball on a video and in a news article.

Ben’s life exemplifies what the CPD is all about—advocating for people with disabilities, improving their lives, and helping them become more active participants in their communities.

Ben’s natural enthusiasm for playing basketball is helping a generation of young people gain a “new perspective” on what it means to have a disability.  And he is showing the world that it is more about what you can do rather than what you cannot do.

It looks like Ben is going to be doing a lot of things in his life…only on a different level.

The CPD is grateful for the long association the Ballam family has had with us, serving on both the CPD Advisory Council and the Consumer Advisory Council.

Written by Mike Wyatt, a family representative on the CPD Consumer Advisory Council.

Matt Wyatt

In 1983, our first child was born. His name is James Matthew Kalani Wyatt. Matt, as we called him,  came to us as a great blessing. He was so darn cute. But after several weeks we noticed he was getting severely bruised. When I would pick him up by holding him under his arms he would later develop bruises where my fingers had gripped him.  We mentioned this to our pediatrician and he sent us to the UC Davis Hospital in Sacramento. There we had him tested for several medical possibilities. It turned out he had a genetic bleeding disorder call Severe Factor VIII deficiency, commonly call Hemophilia A severe.

Well this diagnosis sent us on a great adventure into the realms of hemophilia. By the time Matt was about 18 months old we were versed and practiced on giving him his medications via IV.  We had moved to McChord AFB in Tacoma WA.  Being that Hemophilia is a bleeding disorder and the meds were made from plasma, we decided to enter Matt into a transfusion safety study. Mostly to track and find out if he had been exposed to Hepatitis. Well, one of the tests that was taken was called the Elisa Test for HTLVIII. Later to be called the AIDS test. Little did we think he would ever be exposed to HIV.  On Halloween day, October, 1984 we found out he was indeed infected with the AIDS virus.

This was the beginning of a long scary journey into the world of AIDS. At that time we found little education was available and many doctors and nurses knew nothing about the disease and even less in children with Hemophilia. So we began a quest for knowledge that took us from Seattle to Honolulu to San Francisco and the National Institutes of Health in Washington DC. The Air Force transferred us to Hickam AFB in HI. There, we found that Hawaii was so far ahead of the rest of the nation on being ready for the first known student in public schools (with AIDS).  When Matt entered kindergarten it went very smoothly.

For me, it was a golden opportunity to not only learn more about AIDS, but to give back to the people knowledge and experiences to alleviate their fears and concerns about AIDS in their community. I spent 5 years working as a volunteer with the Dept. of Health, Dept.  of Education, and the Hawaiian Red Cross.  I was very honored to become the volunteer of the year for the Red Cross and to receive the Valley Forge Medal of Honor for doing AIDS education in the Hawaiian Islands.

Along about our third year in Hawaii, a co-worker on the Governor’s subcommittee on AIDS, protocols asked my wife and I if we were interested in foster-caring a little girl who was HIV positive. This girl was not wanted by any family members, and they couldn’t find a couple who wanted to care for a baby. Well, we took her into our home as soon as we could. This turned out to be a great blessing for us, as well as for her. At 24 months of age, she seroconverted to HIV Negative!!

We finally adopted her after a long drawn out battle with the Hawaiian Department of Human Services. Unfortunately, she had also been exposed by her mother when she was still pregnant to meth, heroin, and alcohol, Today she has been diagnosed with Fetal Alcohol Syndrome. That’s #2 in our lineup of disabilities in our family.

After being transferred back to Washington State, our son, Matt, died in 1996 at age 13 years and a month. (Note: From the same lot numbers of factor 8 that Matt received and got infected with HIV from, 92 children have also died of AIDS.)

About two years after Matt died, we decided to move to Utah so I could attend USU. While in the process of packing and moving my wife starts labor pains. So we moved and she stayed with friends in Washington. Before I could go back and get her, she delivered our last child, Paul. Paul was born with Trisomy 21 Downs syndrome. This brought the third disability into our home.

The Wyatt children

We have been blessed to have these children in our homes and our lives have been enriched by them. That’s not to say it has been without challenges. Oh my, I cannot begin to tell that story. It would fill volumes.

But the most wonderful things have occurred.  We learned to be our children’s advocates. We have been helped and supported by many, many people–more than we could name. More than that, we have been very open and forthcoming about our children’s disabilities and have reaped the benefits of that choice. We found people are more likely to trust you when you don’t hide the facts, than if you do and get caught.

That brings us up to today.  We try to share our story, not for pity or attention, but to help others to learn and grasp the blessings that have  come from having children with special needs.  That’s why we try to give back to our community.

THANKS,

Mike Wyatt

We are well into a new year that holds a lot of promise and hope for people with disabilities.  The Consumer Advisory Council members have met this month and have discussed many of the issues that are of concern to them.

Here are the top disability issues that the CAC members see for 2011:

1. Funding for people with disabilities who are on the waiting list for services

2. Funding for dental services

3.  Funding for vision services

4. Funding for assistive technology devices

5.  Funding to maintain current service options

6. Increased accessibility in transportation

7.  Empowering families/caregivers to support individuals with disabilities in the home environment

CAC members will continue to advocate for those with disabilities and their families in Utah to improve their lives and increase their independence.

If you have any comments or questions for any of the members, you can comment below or contact them through the CAC web page.

By Tom Brownlee,  Chair of the CPD Consumer Advisory Council

Here are some helpful ways on being an effective self advocate:
•    Know your rights
•    Know the issues and views
•    Share your views and ideas
•    Respect others’ views and opinions
•    Suggest ideas that are effective
•    Contact/write your local legislators on the importance of funding
•    Share your story with legislators
•    Get involved and be active
•    Learn to be a leader to help those who can’t advocate for themselves
•    Develop a good circle of support that can help you
•    Set reasonable goals for your self
•    Serve on boards and committees
•    Advocate for People First language

These points can help you become the effective self advocate you can be in your communities. To make a difference is what it’s all about for us self advocates.

For myself, I been a strong self advocate and leader for 14 years now, and in that time I  have seen many things, experienced many opportunities, as well as been involved on many boards and committees, and still am to this day. It’s been a rewarding experience for me, making a difference.

Tom Brownlee

NOTE: To help you get started, there are many helpful online resources, such as the Utah Developmental Disabilities Council, Disability Law Center, and the Legislative Coalition for People with Disabilities.

This month’s Consumer Advisory Council (CAC) blog is by Matthew Bone, a family advocate CAC member.

A dad’s opportunity to brag…

My daughter who, without regard to having a genetic skin condition, decided to study theater and recently won an award in a national competition.

Kirstin Bone

For me, that is not of significant importance.  What is important is that, in spite of a disability that would prevent many people from even trying to pursue a career in theater, and in spite of a lack of encouragement from some of her associates, and outright discouragement from others, she has continued to do what she likes and what makes her happy.  She has very clear goals, and has set in her mind how she defines success. She is accomplishing her goals, and being very successful.

Because of the award she won, many universities are encouraging her to pursue her master’s degree with them. Not bad considering many people felt she would never be able to get her bachelors in the field of
theater with her disability.

I am hoping from this you will take the message that it does not matter what your disability is, you can accomplish things that other people cannot comprehend. While they see your limitations, you know
your potential. Don’t let the limitations they see stand in your way.

The members of the Consumer Advisory Council would like to wish all of you a Happy Holiday season, and a wonderful New Year!

This CAC Corner message is from Claire Mantonya, Director of the Utah Developmental Disabilities Council and member of the Consumer Advisory Council.

The Utah Developmental Disabilities Council (UDDC) has just completed a video project with Todd Newman from KSAR at CPD.   The video captures the needs of people and their families with disabilities and it is geared to help legislators and the general public understand the complex needs of care.

There are four video clips in the UDDC series:  1:  Introduction, 2: Respite, 3:  Day Supports, and 4;  Residential  Services.  The message is to keep people (with disabilities living)  at home and keep people (with disabilities) working!

The holiday season is terribly busy, but now is the time to meet with your legislators before the session starts in January to help them better understand that human needs are important and they do not go away!   Make it a goal to teach people all around you about the importance of public funding to help families and individuals lead productive lives in their communities!   The more people who learn about these needs, the better chance the disability community has to get the funding that we need!

Please feel free to call me at 800-333-8824 or email me at clairemantony@utah.gov if you need additional information!   Happy Holidays to you.

This CAC Corner blog is written by Tom Brownlee, Chair of the Consumer Advisory Council

With the election coming up (November 2nd) my biggest concern is getting  people with disabilities out to their polling places to vote.  We need to make sure the polling places are accessible.

Picking those with disabilities up and taking them to their polling place would make a big difference in the voter turn out.  It is important that people with disabilities have a right to have their voices heard in the election process.

Get out and make a difference.  Let your voice and vote be heard!

NOTE:  To register to vote in Utah, see a sample ballot, or find your polling place you can go to the Vote Utah website.

By Adina Zahradnikova, Director of  the Disability Law Center

The Utah Disability Law Center is seeking input from people with disabilities, family members, disability professionals, and volunteers about the most important issues impacting people with disabilities for the 2010-2011 fiscal year.

We have developed a draft set of advocacy goals, but,  in order to ensure that we are addressing the most important issues impacting people with disabilities, WE NEED TO HEAR FROM YOU. Your feedback will be used to validate and/or modify our plan.

To make sure we hear from as many people as possible, we ask that you send the link (below) to this survey to your friends, family, colleagues — or anyone who may be interested in the issues impacting the lives of Utahns with disabilities.

To make sure your feedback counts, please complete the survey by Sunday September 12, 2010.

Survey Link http://www.surveymonkey.com/s/D87ZFLW

Let us advocate for you on the issues that impact you the most.

This is the first of a series of monthly blogs that will be written by members of the CPD Consumer Advisory Council. CAC members will feature blogs on issues and information that impact the lives of people with disabilities and their families.  Your comments are welcomed.

This month’s blog is written by CAC member Matthew Bone, a family advocate.

CAC member, Matthew Bone

The importance of building a personal support resource group for families and individuals with disabilities and the role the CPD can play in this, or,  You are not alone

When our daughter was born, we knew right away she had health issues.  We learned very quickly that the amount of work required to care for a child with health concerns was significantly greater than for a child without health issues. The doctors did not know what the real issue was, only that she was not expected to live. Now nearly 22 years later, she is in her final year of college, and doing great. She still has the same condition; we just learned how to deal with it.

The other thing we learned was; you need a support group! A support group is made up of people and organizations that you can call and ask to help. This may be as simple as coming over to talk, or other people with similar conditions. It really helps if you can talk to someone who has been there, and done that!

Look for groups that specialize in the area of concern for your child.  With the Internet, it is getting much easier to find information and people who are willing to talk. Recently I found out about the CPD and would recommend looking into what it can offer you. It can be a valuable member of your support group.

Build your support group, and most importantly use it. It will make your life and the lives of everyone around you better.

The thing I encourage people to remember is you are not alone, there are people who are willing to help, but you need to let them know you are willing to let them help you