Tuesday, March 12, 2013

Written Testimony Before the U.S. House Committee on Oversight & Government Reform


November 30, 2012

Main Concerns:
  • Re-aligning funding to remove the racial, ethnic, gender and income disparities in access to accurate diagnosis, lifespan supports and services
  •  Distributing research funding to increase research in assistive technology supports, quality of service provision, and directly addressing the needs of Autistic individuals and care providing families throughout their lifespan
  • The importance of the Olmstead decision for my son and those like him
  • Medicaid will be important to my son; continued federal governance is needed

Thank you, Chairman Issa, Ranking Member Cummings and esteemed Members of the Committee, for allowing me to share my family’s concerns and Autism experiences with you.

My name is Kerima Cevik.  I am a resident of Prince George’s County, Maryland and mother to Mustafa Cevik, affectionately known as Mumu, a wonderful 10-year-old boy with multiple intellectual disabilities. When our son was four, we took him to the Kennedy Krieger Institute for evaluation. After three years and four pediatricians telling us “let’s wait and see, maybe he’ll speak” our son was given a grim diagnosis that included the labels “low functioning” and “nonverbal Autism”.  We were told that our son would never speak; he’d never improve, that he would always need help with all his basic needs.  We were also told there was nothing we could do to improve our son’s situation. Then we were left to absorb this harsh reality about our child.

Since his diagnosis, we have seen our boy repeatedly surprise the experts. We videotaped our child doing things we were told he did not have the cognition to do. The team at Kennedy Krieger realized our son was capable of learning and retaining what he learned. He was in fact, not as he appeared. We were told we were at the bottom of the developmental mountain with our son. But he showed them differently. What we’ve learned about our son is that he has the ability to achieve whatever he goal he sets for himself despite the severity of his disabilities. And each developmental roadblock he passes drives us to fight that much harder for his right to respect, acceptance, literacy, and his right to gain the intensive supports he needs to help him be as independent as possible throughout his lifespan.

Our son is very brave. He has survived abuse and neglect in school. He steps outside each day to a world where he is gaped at and made the object of ridicule. I am a woman of color, what our government has labeled “Black of Hispanic origin”. So I know what discrimination is. I cannot explain why this hate exists to my son. He senses it however. He faces racism and ableism patient and unfazed, because he knows he is loved and accepted at home. He has made great strides despite not being allowed to benefit from the treatments and therapies that are supposed to be available at his school and in his community.

My son’s story is not unusual for special needs children in families with racial and ethnic differences. So I was disappointed when I heard a medical professional testifying that late diagnosis and disparity of care were the result of episodic medical visits to pediatricians by minority families.  Racial bias in health care and education is well known and I expected that to be addressed by witnesses at this hearing and it was not. I am respectfully requesting the committee invite witnesses from a broad demographic, who might be able to give testimony about the experience of racial, ethnic, and gender differences and how this directly impacts supports and services for Autistic individuals who are also minorities or women.

It angered me to hear some of the testimony at the hearing because our son is our pride and joy. He is an amazing human being. His strength of will alone is humbling. Is it easy to not work outside the home in order to teach and care for him? It is a great deal easier than what my son deals with each day of his existence. And yet he gets up and jumps into life with all the joy the rest of us may sometimes lack. He deserves better than being called a burden.  He is not a “damaged child”. Autism did not take our son away; our son is Autistic and is learning to meet and master his challenges. I cannot get up in the morning and remove my dark skin; I expect the world to accept me as I am, because my skin looks good on me. While the devastating historical attacks on the self-image of dark skinned people have created a market for skin-lightening treatments, “curing” my dark skin is not the answer. Nor can my son’s brain be removed from his body; it is part of who he is. The answer then, is to accept him as he is, and help him meet the challenges his neurology might present him. The Autistic ability to persevere is giving him the will to work to master skills many of us take for granted. And if funding is balanced and distributed in such a way that my son and all those waiting for services are given the supports and accommodation needed to be fully contributing members of society they will not disappoint. Our son’s continuing story is proof that motivation, will, and courage are the ingredients of successful people.

Funding for Services and Supports

Research is a fine thing and I support it; but our son and his peers will not benefit from any research currently being done because this research is not in areas such as better learning approaches, life skill acquisition, Autism specific healthcare and more efficient and affordable assistive technology. There is very little research on the health profiles of individuals on the Autism spectrum. And what caused my son’s brain to be wired differently and whose fault it may be is probably the least urgent of the questions he needs answered. Autism’s primary challenge is communication, and yet no research dollars are invested in assistive technology and education strategies to maximize literacy in nonspeaking Autistics. I fought to get a single assistive technology evaluation and this evaluation resulted in the professional opinion that our son could use an iPad and TouchChat App as an affordable speech device. He is learning to use it now. This single event could change the entire quality of our son’s life. We must somehow afford a second iPad device and the software to have on hand as a backup communication device should his present device be damaged. Families are borrowing money, fundraising, trying to do anything they can to get the equipment they need for their loved ones to communicate. Imagine how we feel when we are told that funding for iPads and iPod as AAC devices is not approved but funding for a $10,000 dynavox device and the requisite supports and equipment needed to make using it feasible is. If the funding spent on awareness campaigns was spent on iPads the impact on the %25 of the Autistic population that needs communication support and literacy would be life changing. Where funding goes and how it is used in our community concerns us.

Because our son is learning to use an iPad speech device, someday he might be able to testify about his needs directly before your committee. Many older children and adults on the Autism spectrum who do not have verbal speech are erroneously labeled “low functioning” and thought to be incapable of learning. We were told our son would always have the mental age of a 6 month old. His life is changing because we ceased listening to what he could not do and began focusing on what he could.  Shouldn’t more than 2% of funding go to helping our children and Adults on the spectrum become more independent? Much of the aggression associated with some Autistic nonspeaking children and Adults resolves itself when these individuals are given a means to communicate. Yet research is lacking on Autism and literacy.

The Olmstead Decision
When our son was first diagnosed, we were told that at some near future date, we would be placing him in an institution. If you are a parent, probably one of the most horrific things you could be told is that it might be a good idea to institutionalize your toddler. I am so glad we did not heed that advice but instead sought support from the Kennedy Krieger Institute and other resources to help our son. He has made greater improvement at home and in his community. While many of his peers are on medications to reduce anxiety and regulate sleep, he is medication free and is receiving professional help to manage the overwhelming sensory input he deals with daily without medication. Unfortunately life in institutions often came with medication used for chemical restraint, and for many of developmentally disabled children heartbreaking abuse and neglect. Funding for community-based care allows families like ours to be educated care providers and our children to live in whatever degree of independence they can. Whenever a vulnerable population is made to be dependent on an institutional style care setting the risk rises for abuse. The Olmstead decision has saved the lives of hundreds of disabled children and adults and is creating environments that allow us to see our children in our schools and communities and not shut away and harmed. The benefit of my son being out and about in his wheelchair is that his is accepted in his community. Our son is an active part of his community everywhere typical children are. The only way to end the maltreatment of developmentally disabled children and adults is to end segregating them. The idea of our son, after having come so far, being forced to live in prison-like conditions because he is disabled is horrific to me. The federal role in assuring that our son and all those like him are not imprisoned in the guise of providing housing supports because they are in the profoundly disabled category is critical.

A final concern about Medicaid Funding
Although our son is not currently a Medicaid recipient, his degree of disability dictates that at some future date he will be. Many of his disabled peers are able to have the critical medical support services they need through Medicaid. Please do not reduce the role of the Federal government in Medicaid services.

Thank you for your time and consideration.

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