Newsletter Volume 10 Issue 2

Newsletter (Volume 10, Issue 2)

OFFICE OF DISABILITY CONCERNS
WILL'S CORNER, OKLAHOMA
(Serving the Disability Community of Oklahoma)
Volume 10, Issue 2
April, 2009

A Better World

What if we could live in a world where difference was not important? What if we could live in a world where we were accepted for who we were? What if we could be free to live life to the maximum of our ability without the least shadow of misunderstanding?

Some people would say we might find that in another life, but many would not recognize this possibility in this life. A young girl in Watonga, Oklahoma had faith in a better world. Her family had faith in a better world for their daughter, and they believed in their little girl. Their belief and the belief of a lot of other people made a real difference.

Let me tell you the story of Faith Petty—a little girl who has been in this world a bare four and a half years. Faith was born with only partially-formed arms and legs. She was born with the mind and curiosity of all children. She is one of triplets. Michaela and Harley, her two sisters, were born without disabilities. The three girls play together and fight together like any sisters would do.

Before the girls were born, the doctor told Kim and Michael Petty that one of their daughters would be born with a disability. They wanted all their children. Kim laughs and says that, “If I believed in reincarnation, I am convinced that Faith was a princess in her other life.” Faith has been raised that she is a person like all the rest of us. Yes, she does have a disability, but sometimes she forgets.

Mackenzie Sturgeon was the Head Start worker from Enid assigned to serve Faith Petty in her home. After working with Faith several months, she noticed she did not see a wheelchair for Faith anywhere around the house. Faith was small, even for her age, and her family carried her where she needed to go in those days.

When Mackenzie found out Faith did not have a wheelchair even though a physical therapist had recommended a motorized chair for her, she took some action with the family’s consent. Mackenzie raised $1400 in private contributions to purchase the $7000 wheelchair Faith needed.

The Petty family added another $1000 to what had already been raised, but they were still far short of their goal. Things didn’t look good, but they believed that if it was meant to be, it would happen.

Charles White saw Faith, her siblings and her mother in the Watonga post office. He saw Faith’s mother carrying her and decided to get involved in helping Faith get a wheelchair. He presented the situation to his church— Watonga Christian Church—and the church agreed to raise funds on two consecutive Sundays.

The church raised $3000 one Sunday to help purchase a motorized wheelchair for Faith and $1600 the following Sunday. This was sufficient to pay the full cost. You can only imagine how proud the Petty family was when the gift of the wheelchair was presented to Faith during a regular Sunday service. That was February 1, 2009.

The chair has been wonderful, and Faith is able to use the joy stick with the palm of her left hand. This has permitted Faith to be more independent, especially in the pre-kindergarten classes she attends in the Watonga Public Schools.

But that is not the end of the story. The Petty family has been involved with Shriners Hospital in Shreveport, Louisiana to help in some of Faith’s medical needs. (A Shriner from Geary, Oklahoma sponsored Faith so she could receive services through the Shriners Hospital.)

Faith received a set of prosthetics from Shriners Hospital to help her stand. Because Shriners was so far from home, and the family was asked to come down and stay a week at a time, the family found Limbs for Life Foundation in Oklahoma City which was willing to provide Faith with the prosthetics she needed. Limbs for Life will follow Faith as she grows up and will exchange her prostheses as her size and weight increases.

Now Faith can walk for short distances on her prostheses, but she still must use her wheelchair because her hip is not properly formed, and it is too much to walk long distances. Hopefully, when Faith is grown, she may have a surgery which will restore her hip joint where she will not need a wheelchair anymore. She will be able to walk normally on her artificial legs.

In her short walk in life, Faith has found lots of friends and family to help her along the way. With that assistance, she may be able to become a productive member of society. Thanks to all of you out there who have been so supportive. Your concern has made a difference in one little girl’s life.

The Arts and Accessibility

The Oklahoma Arts Council is the state government agency responsible for increasing the access Oklahomans have to the arts. The Oklahoma Arts Council is funded by the Oklahoma State Legislature and the National Endowment for the Arts.

The Oklahoma Arts Council awards grants to private, non-profit organizations around the state to promote the arts. While they do not offer grants directly to individual artists, they do offer information on professional growth and development.

The Oklahoma Arts Council seeks to make the arts available to various underserved groups which include people with disabilities. They question applicants for their grants if their programs are compliant with the Americans with Disabilities Act (ADA).

The Local Government Challenge Grant is available to any incorporated city, town or county government in Oklahoma to support a local, non-profit organization in that community. The grant can be utilized for a variety of purposes by that arts organization including for capital development or building improvements. The grant will provide up to $5000 which must be matched by the local government agency.

The City of Holdenville was awarded such a grant and used it to assist the Holdenville Society of Painters and Sculptors. With the grant, they were able to make a bathroom in the downtown art space fully accessible to people with disabilities.

Molly O’Connor from the Oklahoma Arts Council travels frequently to locations which promote the arts all across Oklahoma. In her site visits, she talks to leaders in the arts community about their concerns. She has an evaluation form which organizations can use to self-evaluate the accessibility of their program.

Molly is also establishing an Arts Accessibility Task Force at the Oklahoma Arts Council. This task force will provide expertise from all over Oklahoma including arts organizations, individual artists with disabilities and disability organizations. The task force will begin with twelve appointees. Molly shares that in its first year the task force will be defining its role and deciding how to go about accomplishing it.

If you would like to know more about the Oklahoma Arts Council, visit their website at www.arts.ok.gov. You may contact Molly O’Connor at molly.oconnor@arts.ok.gov.

Accessible Housing Construction

The Office of Disability Concerns fields questions quite often from people looking for accessible housing. Most of these questions are directed toward housing rentals, but some people are looking for new construction.

We continue to build new housing in Oklahoma which is inaccessible to people with disabilities. Recently we received a call from a residential and commercial contractor who wanted to build a home which was completely accessible to people with disabilities.

We arranged a meeting with the builder and staff from the Oklahoma State Fire Marshal’s office. The Director of the Office of Disability Concerns who himself has a mobility impairment, was also present in that meeting.

The builder had a set of floor plans for a 2300 square foot home which they were currently constructing in the Oklahoma City area. The home had a number of features which would be convenient for people with disabilities.

First of all, both the living area and the garage would all be on one level with no stairs whatsoever. Doorways, both inside and out, were 36 inches wide. Hallways were a full 48 inches wide to allow a person in a wheelchair to pass another individual.

During the discussion on flooring, the Director of the Office of Disability Concerns suggested that heavy, pile carpet is difficult to negotiate in a wheelchair. He also suggested that carpet which does not have padding underneath is easier to roll a wheelchair on.

The State Fire Marshal’s Office added that having a sprinkler system can insure a safer home to people with disabilities. We have newer sprinklers now which are not as large and unsightly as have been used in the past.

One person present mentioned visiting a woman’s office recently who had an automatic sensor which locked and unlocked the door. This was enormous benefit to her because she had very little grip in her hands. People enjoy automatically opening their cars, and they might also enjoy this same feature in their home.

Bathrooms and kitchens are important rooms for people with disabilities. The contractor shared that there would be three bathrooms, and one would be equipped with a roll-in shower to permit a person in a wheelchair to transfer to a shower seat and shower with a hand-held nozzle.

Cabinets would be in the bathroom under the sink, but the sink would extend out to permit convenient usage for a person in a chair. Grab bars would be positioned to make transfers easier. Pedestal sinks are available without cabinets underneath which are even more convenient to a person who needs foot room to roll up to the sink.

In the discussion about the needs for people who are deaf, we learned that smoke detectors are now made which will actually move the bed of a person who is deaf to wake the person in case of fire. Lights that signal someone is at the door and that signal the telephone is ringing bring accessibility to the person with hearing loss.

The Office of Disability Concerns suggested that appliances are very important to people with mobility impairments. Front-loading washers and dryers are more usable by people who are approaching from a chair.

Lever door handles and faucet handles are easier for the person who does not have good grip. And of course, lower kitchen cabinets are important for the person ambulating from a chair.

In the new home under construction, easy entrance and egress have been factored into the plans. It is important that people with disabilities be able to get out of the home if there were a fire.

While the Americans with Disabilities Act, accessibility guidelines does not apply directly to private, single-family housing, it still offers some good standards on accessible housing. The American National Standards (ANSI) does apply to single-family housing and contains standards for contractors who want to build accessible dwellings.

The Fire Marshal provided some good websites to contractors and home buyers alike. Http://www.access-by-design.com/adaag/adaag2.htm provides diagrams of design approaches. Http://www.access-board.gov/adaag/html/adaag.htm provides a link to the main page of guidelines. Fair housing guidelines main page is at http://www.hud.gov/groups/fairhousing.cfm.

This 2300 square foot house being built in Oklahoma City would probably be too expensive for most people with disabilities. The majority of people with disabilities would not need three bedrooms and three bathrooms. We need accessibility and universal design in all new construction regardless of price range.

People without disabilities enjoy the same features which people with disabilities want and need. Comfort and convenience where we live appeals to everyone. Building accessible housing is important to us all.

Changing the Course of Autism

Autism is a challenge to the individual and to every other person who meets that individual. It is a condition which defies everything we have come to consider as normal in our children’s development.

Lives are wasted. Families are devastated. Schools are overwhelmed. What can we do about this growing challenge? Back in the 1980’s, it was estimated that 2-5 children in 10,000 had autism. Today that figure is 1 in 150, and that increase is not just about better reporting. It is an absolute increase.

Children who seem to be making all the developmental milestones suddenly begin to lose the skills they have acquired. They lose their budding vocabulary. Loving toddlers begin to shy away from bewildered parents. They develop repetitive behaviors which seem totally unrelated to the world the rest of us inhabit.

But this is by no means the end. Sometimes children develop diarrhea and must be changed six to ten times a day. Sometimes they can’t sleep at night. Sometimes they develop seizures. The symptoms vary but whatever they are, they persist to the dismay of parents and teachers alike.

We wring our hands and demand answers. We took the mercury out of childhood vaccines in 2001 only to discover we still use it in dental amalgams. Some people say the heavy metals which permeate our modern environment are killing our kids.

Some people say autism results from neurological damage to the brain caused by a run-away inflammation cycle. Other people postulate that autism begins in the gastrointestinal tract with only secondary damage to the brain. Still other people say that children’s bodies lose the capacity to detoxify and are overwhelmed with the poisons of modern society.

Autism was first identified way back in 1943, and the experts attributed it to “refrigerator moms.” These emotionally-cold mothers did not show their children the intimacy they needed. That, at least, was the theory way back then.

We’ve come a long way since then in understanding the causes of autism. At first it was considered a mental illness to be treated behaviorally, but now we understand it as a medical problem with behavioral overtones. This is a sea change in our approach.

When we say autism is a medical problem, we are saying that it is a problem based in our physical bodies. We know that 70-80% of children with autism have gastrointestinal complications. Gastritis and esophagitis are common. We know that diets and food supplements benefit children with autism.

Way back in the 1980’s, we found that gluten free/casein free diets could benefit children with autism. We’ve since learned that vitamins can also help. Vitamin B12 is a detoxifier, and we’ve already said that a build up of toxins can cause symptoms of autism.

Colustrum from cows can improve the body’s immune system which fights that vicious cycle of inflammation in the brain and bowel. Fresh foods which are less processed benefit because they have less of the toxins which compromise the immune system.

Traditionally we have treated autism with psychoactive medications. These may be necessary when behaviors cannot be controlled otherwise. Applied Behavior Analysis (ABA) is a means of attacking the symptoms of autism through controlling behaviors.

Parents throw their hands up in despair as they watch their children slip away into a world set apart. The wall of silence seems impenetrable. We must think and based on that thoughtful research, we must act.

Because the challenge is so new, we cannot rely on our doctors to know everything. Some doctors will know more than others. Keep a journal of what is going on with your child with autism. Be your child’s best advocate, and be prepared for a marathon instead of a sprint race. We’re in this for the long haul.

This article is based on the book by the same title (Changing the Course of Autism.) Bryan Jepson, M.D. is the co-author with Jane Johnson. The copyright is 2007 by Sentient Publications in Boulder, Colorado.

Announcement:

For the July 2009, October 2009, January 2010 and April 2010 of Will’s Corner, Oklahoma you may access on our website www.odc.ok.gov. We hope to join you with hard copy mailings for the July 2010 edition. This is due to budgetary constraints.

Thanks, Will

CALENDAR OF EVENTS

May 13-15, 2009 Oklahoma Special Olympics on the campus of Oklahoma State University. Call 800-722-9004 for more information.
May 19, 2009 Improving Access to Medicaid and Food Stamps (for the general public). Tulsa Technology Center (Riverside Campus) 801 E. 91st Street. Contact Kelly Earles at 405-522-0103 for more information.
May 19-21, 2009 “Lights, Camera, Action—Aging Today” 2009 State Conference on Aging at the Reed Center in Midwest City, Oklahoma. Call the Areawide Aging Agency at 800-211-2116 for more information.
June 9, 2009 The Wisdom of Alzheimer’s Education Conference and Celebration Luncheon. Renaissance Hotel in Tulsa, Oklahoma. Call 918-481-7745 for more information.
June 11-14, 2009 UCO Endeavor Games for athletes across the United States with disabilities. There is an entry fee to participate. Contact Leigha Joiner at 405-974-3160 or ljoiner1@uco.edu for more information.

If you have an event coming up relating to disability, let us know at 800-522-8224 and we’ll help you publicize.