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The ability for families to get services for children with developmental disabilities may increase if a new rule proposed under the Affordable Care Act becomes final.
In this "Kids News Extra" segment Dr. T reviews the article, "Proposed Rule Mandates Coverage of Habilitation" from the ASHA Leader about proposed mandate to cover habilitative services.
"Habilitation" is intervention to help a child build skills in which they are delayed or disordered. It's similar to the more familiar term of "rehabilitation" whereby an individual receives intervention to regain skills that are lost second to an accident, a disease, or the like.
The ASHA Leader is a publication of the American Speech-Language and Hearing Association which provides information for the public and governs the professions of speech-language pathology and audiology.
This proposed rule goes beyond speech-language and hearing services and regards global developmental issues. We hope it's helpful.
Send your comments and quesitons to us at info@KidsAtoZ.com
Best,The Kids AtoZ Team
Where do we go in Washington state to get connected when it comes to helping individuals living with autism? What services are accessible from the state? How do we plug in? How do we navigate the often confusing and complex systems maze?
Good information leads to better choices and decisions for people on the autism spectrum or with other developmental disabilities and differences, yet survey data shows many families say they do not get enough information to effectively participate in planning services for their family members.
This is of concern to Autism Empowerment and other advocacy and support organizations that believe clear, concise information from trusted sources is critical to every family’s ability to access resources and care for individuals on the autism spectrum.
Listen in today as Autism Empowerment Radio interviews Eva Rooks, Communication and Planning Manager for the Washington State Developmental Disabilities Council.
We will talk about current priorities for the DDC and we'll learn how to plug into and navigate the WA state Informing Families, Building Trust website, blog and informational outreach.
Sponsored by the Washington State Developmental Disabilities Council, in collaboration with the Division of Developmental Disabilities and others, the IFBT goal is to provide information about issues, services and supports that make a difference in the lives of individuals with developmental disabilities and their families.
Interested in Autism and Developmental Disabilities Advocacy in Washington? So is Autism Empowerment!
Tune in as John interviews Autism Empowerment Executive Director, Karen Krejcha as she talks about her recent weekend in Olympia. As part of a year long Disabilities Leadership Development Program, she traveled to Olympia with other self-advocates, parents and professionals. She had the opportunity to receive training, network with other advocates and no-profits, tour the State Capitol, share lunch with local legislators, learn about the legislative process and practice advocacy skills and testifying before Congress.
We will chat about a variety of topics of interest that came up during the training including Seclusion / Aversion rooms in Washington schools, the No Paid Services Caseload, Respite Care, Companion Homes, Vocational Traning and help for individuals experiencing cultural communication barriers.
Even if you don't live in Washington, you will likely find this show valuable in terms of understanding more about what kind of services our government provides versus what is provided through the private sector.
Marcia Scheiner is the founder and President of Asperger Syndrome Training & Employment Partnership. Prior to founding ASTEP, Ms. Scheiner spent 25 years in the financial services industry, most recently as CEO of Centrally Managed Businesses for Zurich Financial Services. She has also held management positions at Chase Manhattan Bank and Canadian Imperial Bank of Commerce. Ms. Scheiner is a graduate of Wellesley College and has an MBA from Columbia University’s Graduate School of Business. She is the parent of a young adult son with Asperger Syndrome.
ASTEP creates and supports programs that promote long-term employment for individuals with Asperger Syndrome (AS) and similar autism spectrum profiles through:
Educating employers about the benefits of hiring individuals with AS or similar autism spectrum profiles and the accommodations they may require.
Developing partnerships between Employers and Vocational Rehabilitation professionals to create a successful workplace environment.
Providing Managers and colleagues of AS/similar autism spectrum profiles employees with an understanding of the behavioral differences perhaps seen in their autism spectrum co-workers.
I have a child with a developmental disability.. where will they live without me?
Rachael has worked with individuals with developmental disabilities for approximately 7 years. Most recently, she was an Assistant Manager for The Center for Disability Services for a group home with 7 adults. Rachael is currently a full time MSW student at SUNY Albany.
When a family has a child with a developmental disability, their future is often uncertain. Individuals with developmental disabilities are often somewhat, if not completely, dependent on their caretakers. Group homes are often an option for families to consider as their child continues to grow and parents become older and less able to care for their child.
Mike and Joyce speak with Laura Castillo, Executive Director of FivePMinus.org, helping families affected by Cri du Chat (Cat Cry) Syndrome (CdCs).
Babies born with CdCs are characterized at birth by a high-pitched cry, low birth weight, poor muscle tone, microcephaly, and potential medical complications. "5p-" is a term used by geneticists to describe a portion of the short arm of chromosome number five that is missing in these individuals. Some of the facial characteristics include:
Round "moon shaped" face
Small upturned nose at birth
Small or low set chin (micrognathis)
Low positioned ears
Downward slanting of the eyes
Wide spaced eyes
Extra skin fold at the inner corner of one or both eyes (epicanthal fold)
These facial features usually elongate as the child enters adulthood. Children with CdCs are often also diagnosed with autism since many of the developmental issues are similar.
There is a great deal of good information on this syndrome on their website. See especially http://www.fivepminus.org/Development
Laura shares with us the origins of the 5p- Society, the national family support group for individuals with Cri du Chat Syndrome. They group shares expeerience and provides support to individuals and families affected by CdCs, sharing strategies for managing the syndrome and supporting their children in achieving his or her maximum potential Children with Cri du Chat Syndrome can lead full and meaningful lives with love and support.
Anna Bullard's advocacy for her daughter and other children with autism is a true inspiration. Many people will be familiar with her fight for autism insurance coverage in Georgia from her youtube video (Ava's Story, Autism Insurance for Georgia).
Anna Bullard is the Director of Community Outreach and Advocacy for the Early Autism Project (EAP). She is on the board for the Autism Society of Georgia and the Autism Advisory Council Center for Leadership in Disability,GSU. She has been working as a parent advocate for Ava’s Law since 2009. Anna is an advocate for services and other needed resources for families with autism throughout the southeast including Ga, FL, SC, KY and TN. She has made it her personal mission to see that these families have equal access to services no matter where they live. Anna is married and has three girls. Her 10 year old daughter, Ava, was diagnosed with autism in 2007 and has been the inspiration for her passion to see every child with autism have the resources and services they need to meet their full potential. Anna recently received the national “Speak Out” award.
We talk with Christopher J. Smith of Southwest Autism Research & Resource Center (SARRC) about emerging technology and research to support individuals with autism.
Christopher J. Smith, Ph.D., Vice President and Director of Research at SARRC, is an experimental psychologist with expertise in the diagnosis of autism spectrum disorder and measurement of associated traits. Before joining SARRC, Dr. Smith was an assistant professor in the department of psychiatry at the Mount Sinai School of Medicine, and still maintains a faculty position. His background is in phenotyping complex psychiatric disorders for the purposes of genetic studies.
Under the direction of Dr. Smith, SARRC’s research team focuses on improving the early detection of autism spectrum disorder (ASD) and expediting accurate diagnostic methods; advancing research on effective treatments for autism, both pharmaceutical and behavioral, that lead to an improved quality of life for individuals with the disorder and their families; and educating all kinds of professionals in the community to improve detection, diagnosis and services for individuals with autism.
I was born with severe Autism. On my show I welcome anyone who wants to speak their mind regarding Autism. If you have questions regarding your daughter or son who has Autism I have the answers. Or maybe your a BCBA and you want to talk to someone who has inside knowledge of Autism. Whatever The case may be..You can trust me with your very valuable time.
Tips and Resources for the Disabled Traveler are discussed on this weeks, The Traveling Eye. Join Bonnie DeShong and Ja'Vonne Harley as they discuss the many types of travelers who may need assistance. The Americans with Disabilities act and how all affect travel. What you may or may not know to make your travel more accessible and how to enjoy your trip, no matter what your needs. "Building bridges to create a new era where people with disabilities will take their rightful place in the world community" - Mobility International USA-
Tune in and have your pen and paper ready! This will be a show full of great information.
The Autism Experience
Hosted by ANUE
Time for episode 2 of the autism experience hosted by ANUE they will share their journey as a person experiencing life with autism. They will talk about their journeys and open up the floor for others to share their journeys. Join in as they explore what direction they will go with their monthly show.
Many of the symptoms and experiences they live with are similar if not the same as many other disabilities we have so much to learn from one another let us let the learning and sharing begin. You won’t want to miss this episode. ANUE is the Autistic Network of Unique Eccentrics. Share in their perspective on live and learn some new tools for your journey
If a child is born with a disability or disorder the challenges can be great. Many parents are not aware of their rights, the law, or the best steps to take to make sure that their children get the best care for optimal development.
Today’s “Brains in Toyland” segment addresses steps parents should consider and resources they should know about if their child is born with a developmental challenge.
Our guests are education attorneys Eileen Libutti and Jennifer Frankola of Lewis Johs Avallone Aviles, LLP who are experts in family advocacy.
We hope this is informative.
Email us any time with questions and suggestions info@KidsAtoZ.com.
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Best, The KidsAtoZ Team.