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Winston's Wish Foundation Home


Welcome to winstonswishfoundation.com. Winston's Wish Foundation is an organization dedicated to increasing knowledge and understanding of children with autism. The Foundation and it's efforts are funded through charitable donations and grants. By partnering with community volunteers, businesses and state agencies, outreach initiatives and programs are implemented throughout South Carolina.

Winston's Wish Foundation supports and advocates for early intensive intervention which is evidence-based and peer-reviewed. It's programs and outreach initiatives demonstrate the organization's commitment to education, inclusion and access to appropriate medical care which reflect best practices in autism treatment. We hope you will return to our site often as we will continue to update it frequently with important information about autism and our initiatives. Thanks for stopping by!

Sprummer 2016

Winston's Wish is pleased to present Sprummer 2016 featuring Big Head Todd and the Monsters. Come help us celebrate our 9th Sprummer Concert Series Friday, April 29, 2016 at 7:00pm at Music Farm Columbia. Tickets will go on sale March 4 at 10:00am through Music Farm Columbia's website. [LINK TO PURCHASE TICKETS]

[LEFT COLUMN LINK TO SC ROADMAP TO DEVELOPMENTAL SCREENING]

[LEFT COLUMN LINK TO SOCIAL MEDIA]

[LEFT COLUMN LINK TO EDUCATION WORKSHOPS]

[LEFT COLUMN LINK TO PUBLIC SERVICE ANNOUNCEMENTS]

[LEFT COLUMN LINK TO CONTACT US TODAY]

[LEFT COLUMN CONTACT US FORM]

[LEFT COLUMN THANK YOU PSA MAD MONKEY]


Current website layout - Winston's Wish Foundation Mission Statement

The mission of Winston's Wish Foundation is to enable South Carolina's children with autism and their families to thrive. We offer new educational opportunities and resources for these children and their families while promoting a heightened awareness and deeper understanding of autism in our greater community. In the future, Winston's Wish Foundation, with local and statewide partners, will create the Palmetto Center for Autism, a state-of-the-art treatment clinic for children with autism spectrum disorders.


Current website layout - Autism Facts

Autism Fast Facts

  • Autism is a complex neurobiological disorder that occurs in children regardless of race or their socio-economic back round. Boys are 4 times more likely to be diagnosed than girls.
  • Autism impairs a person's ability to communicate. It is characterized by absent or severely limited language development, social deficits, obsessively rigid routines and repetitive behavior.
  • There will be more children diagnosed with Autism this year than with Cancer, diabetes and AIDS combined.
  • 1 in every 100 children born in South Carolina will be diagnosed with Autism Spectrum Disorder according to the latest report released from the CDC last month. Considering our population and birth rate, that equates to 620 new cases of autism a year in our state. In the United States, 67 children are diagnosed with Autism EVERY DAY. That is 1 case every 20 minutes.
  • 1 in 80 boys are on the Autism Spectrum. 
  • Currently, South Carolina Department of Disabilities and Special Needs estimates there are approximately 7,700 children with Autism in South Carolina.
  • Autism Disorder is usually diagnosed between the ages of 2 and 3. In South Carolina, the average age of diagnosis is 5.5 years old.
  • Autism has no known cause and there is no cure, however there are treatments available. Early intensive intervention is crucial in order to achieve the best results with behavioral therapy. 
  • Children who are not diagnosed in a timely manner or who do not receive sufficient medical intervention will most likely become wards of the state, unable to function and live independently. They can even end up incarcerated.
  • The average cost of early intensive intervention that is evidence based and peer reviewed, namely Applied Behavior Analysis, is approximately $60,000 - $75,000.00 per child in South Carolina. The cost of institutionalization, according to Medicaid, is $4.3 million - $7.2 million per child over the course of their lifetime.
  • In South Carolina, insurance companies will begin covering early intensive intervention in July, 2008. Until then children with autism who are diagnosed before the age of 8 but who are not older than 10, may apply for the Medicaid Pervasive Development Disorder waiver which is currently being administered by the South Carolina Department of Disabilities and Special Needs.
  • Unlike many adults with the neurological diseases, if a child with autism receives intensive early intervention through Applied Behavior Analysis, a child has a 47% chance of being mainstreamed into a general education classroom, indistinguishable among his peers.
  • ABA therapy is the only medical treatment recommended by the US Surgeon General.

Current website layout - Legislation

Advocacy and Legislation

This section will be updated soon!

South Carolina Department of Disabilities and Special Needs Pervasive Developmental Disorder Program

Legislative History

During the 2006 session of the South Carolina General Assembly, parent advocates organized a grassroots initiative seeking new legislation that would require insurance companies to provide coverage for the treatment of a Pervasive Developmental Disorder (PDD). At the time the insurance companies opposed this mandate. As a compromise to both help families and hold insurance companies harmless, $3 million in non-recurring funds was appropriated to the Department of Disabilities and Special Needs (DDSN) by the General Assembly. These one-time funds came with specific instructions to the agency, via a budget proviso, regarding the new program to be coordinated with the Department of Health and Human Services (DHHS) to provide therapies to young children diagnosed with a PDD.

During the legislative process it was acknowledged that some children were receiving some services through the BabyNet program or through their school. It was clear that this new program and new funds were not to replace or enhance these pre-existing entitlement programs. Those are to continue. The new DDSN/DHHS initiative is not an entitlement program and is to be separate from BabyNet and education services, thus not duplicating state services.

Funding Issues

Data from MUSC about the prevalence of PDD in children in South Carolina along with data from DHHS and the Department of Education indicate there are about 1,100 children who may be eligible for this new PDD Program. It was estimated that the $3 million appropriated could serve about 140-150 of these children, some through a new Medicaid waiver and some with 100% State funds. Every effort has been made to obtain Medicaid eligibility for each child. This helps more children receive the services they need. However, a child does not have to qualify for Medicaid to get this service.

It was clear that all interested families and their children who met the required criteria for participation in the program could not be served. Therefore, in addition to requesting the one-time $3 million appropriated be funded with recurring dollars, DDSN requested an additional $4.5 million in its 2007-2008 budget request to serve an additional 220 children with PDD. It was estimated that a total of $7.5 million could serve approximately 370, or about one-third of the total 1,100 children. This funding was approved by the General Assembly and the Governor for FY 2007-2008.

Service Development

Children accepted in the Pervasive Developmental Disorder (PDD) Program receive two types of services: 1) early intensive behavioral intervention (EIBI) and 2) case management.

EIBI services seek to develop skills of children in the areas of cognition, behavior, communications and social interaction. Case management services assist children and their families in gaining access to needed waiver and other State Medicaid plan services, as well as medical, social, educational and other services.

The initial $3 million one-time service funds were not available to DDSN until December 2006. Over the summer and early fall of 2006, DDSN and DHHS completed a Medicaid waiver application, held a public meeting attended by over 50 interested parents, advocates and providers, and met with Centers for Medicare and Medicaid Services (CMS) officials. The final version of the application was submitted for federal review and comment on September 28, 2006, which usually takes up to 90 days. The federal government (CMS) approved South Carolina's PDD waiver effective January 1, 2007, without any changes. This was only the second waiver of this type approved in the nation.

Meanwhile, DDSN developed information and referral strategies and application procedures, including the establishment of a toll-free number. Information was shared with families and providers, sent to the media and published on the Internet. Parents or families interested in applying for services were encouraged to gather the necessary information and documentation to prevent delay of their child's application process.

Application Response and Process

The initial round of applications was accepted from 8:30 A.M. Thursday, December 28, 2006, until 5:00 P.M. Friday, January 12, 2007. Applications received during this time period were considered by DDSN to be received at the same time. This was the fairest way for all families to start on a level playing field since the funding was not enough to serve every child. Using this process meant it did not matter where someone lived, if they were privately paying for the service or if they were receiving DDSN services.

On Wednesday, January 17, 2007, applications were randomly selected one at a time and numbered in the order they were drawn. This process continued until all of the applications received by 5:00 P.M. Friday, January 12, 2007, had a number. Applications received or postmarked after January 12, 2007, are added on a first-come, first-served basis.

About 390 applicants were received in the first round. DDSN expected that only about 140 to 150 children would be able to participate in the new program at this time based on available funding.

Once numbered, the applications go through the next step of the process in numerical order. This is the Intermediate Care Facility/Mental Retardation (ICF/MR) level of care determination. This process is required by Medicaid to confirm the child's diagnosis of PDD and determine whether or not the child's services can be provided through the PDD Medicaid waiver. Diagnostic evaluations for this process are only repeated if they do not meet a quality standard. DDSN took as many initial applications as possible through the ICF/MR level of care determination until all slots were filled. The remaining applicants were placed on a waiting list.

After a child is accepted into the program, the family chooses an Applied Behavior Analysis (ABA) Consultant from a list of DDSN qualified Consultants who are specially trained in Pervasive Developmental Disorders. The Consultant assesses the child, evaluating his/her individual needs. If the child is already receiving EIBI services, the Consultant evaluates the existing treatment plan and its effectiveness. If the child has no preexisting plan, a more detailed assessment is required.

The Consultant forwards his/her evaluations to DDSN. A treatment plan is approved authorizing the number of hours of EIBI the child will receive based on individual needs. The Consultant then coordinates the implementation of the treatment plan. Trained individuals work with the child one-on-one in the child's home. During this year, DDSN developed a service manual for all providers to use.

Results

As of June 30, 2007, a total of 140 children have been accepted in the Pervasive Developmental Disorder Program. Of these 140 children, 89 meet Medicaid eligibility criteria, 33 are pending Medicaid eligibility, and 18 (13 percent) are participating with 100 percent state funds. There are 382 children on the waiting list. The new $4.5 million appropriated for FY 2008 will serve approximately 350 children on this waiting list.

The original estimate was to serve only 220 children from the waiting list. However, it was originally estimated that only 60 percent of the children would be Medicaid eligible versus the current rate of 87 percent. In addition, the original cost estimate was $35,200 per child versus the current average of $38,783. These changes in current numbers will result in more children being served.

Of the current PDD Program participants and applicants, 84% are male and 16% are female. Ninety-five percent (95%) of the children have a diagnosis of autism and 5% have other PDD diagnoses. Children ages 3 through 6 comprise 67% of participants and children age 7 through 10 comprise 33%.

[AGE BREAKDOWN CHART]

The average budget per child is $38,783. This equates to an average of 29 hours per week of applied behavior analysis therapy for these children. The number of hours provided each child is determined by the individual's initial assessment. This in-depth assessment consists of a battery of four standardized tests. The provider monitors the actual delivery of therapy performed by trained staff. After 12 months of prescribed therapy, the battery of standardized tests will be repeated to assess the progress made and the individual's new level of service need.

In the summer of 2006, DDSN set up meetings to recruit EIBI providers. This first effort generated 5 qualified providers. To date DDSN has recruited 13 qualified early intensive behavior intervention providers. The effort to recruit additional providers is ongoing, both in-state and outside of South Carolina, to offer families a choice of providers and to ensure a sufficient supply of providers to meet the service demand. To further these goals, DDSN is also developing a fiscal intermediary service for families who choose to hire and coordinate their own therapists who would work with a qualified EIBI provider.

Due to the enormous task of getting approval of a new Medicaid waiver, creating eligibility criteria, creating program and service criteria, determining and processing each child's eligibility, and recruiting and educating providers, among other activities, actual therapy services began the last quarter of the fiscal year. Therefore DDSN is unable to report on the developmental progress of program participants at this time. It is expected that results will be measurable after actual service delivery is in process for at least one year.

FY 2008

A total of $7.5 million has been appropriated to DDSN for the PDD Program. In order to prepare for the next year, during the FY 2008 budget process, DDSN requested DHHS submit an amendment to the Centers for Medicare and Medicaid (CMS) to increase the cap on the number of children who can be served through the new PDD Medicaid waiver up to 550 individuals. On August 1, 2007, DHHS received notice from CMS that the amendment was approved. DDSN has made all the necessary preparations to ensure the next 110 children on the waiting list have adequate records in the file to assure timely enrollment in the PDD Program. DDSN anticipates being able to serve a total of approximately 500 children with the funds appropriated.

In addition, DDSN and the University of South Carolina (USC) have entered into a new collaborative agreement. DDSN will contract with USC to increase the capacity of qualified ABA providers. USC will offer five graduate-level courses that will prepare individuals to take the national ABA Certification exam. The first class will begin the 2007 fall semester.


    Current website layout - Programs

    [RIGHT COLUMN LINKS: Education Series, Autism Ambassadors, Bundle of Books, Teaching Toy Box]

    Winston's Wish Education Series Introduction [RIGHT COLUMN LINKS [10]]

    Welcome to Winston's Wish Foundation Education Series!

    Established in 2006 to educate South Carolina's families and professionals in best practices in the treatment and education of children with autism and other developmental disabilities, the Education Series was the first community outreach initiative for Winston's Wish Foundation. Intensive workshops are presented by world-renowned experts such as Dr. Vincent Carbone, Dr. Mark Sundberg, Dr. Brian Iwata and Dr. Tony Attwood and cover a variety of topics and issues surrounding effective, evidence based, peer reviewed treatment and education.

    Here you will find all the information you need on our Series and upcoming workshops. Family members and professionals alike are encouraged to attend as many offerings as possible. It is quite common to see parents learning beside educators, speech language pathologists, school psychologists and behavior analysts. All Workshops offer appropriate Continuing Education Units and Certificates of Completion. Scholarships are also periodically available and are awarded based on need.

    Whether you are already a frequent attendee or a newcomer to our program, please browse our page at your leisure to find additional information on our speakers, programs, the venue and our host city, Columbia, South Carolina! If you have additional questions or are looking for specific information not addressed here, please feel free to contact us and we will do our best to help.

    Thanks for visiting and we hope to see you at a Winston's Wish Education Series Workshop soon!

    The Learning Profile of Asperger's and High Functioning Autism: Managing, Communicating and Understanding Emotions to Enhance the Educational Experience of the Child

    A One-Day Workshop
    presented by Dr. Tony Attwood October 24, 2014

    [LINK TO FOR MORE INFORMATION ON WORKSHOP]

    Autism Ambassadors

    Autism Ambassadors is a collaborative community outreach initiative between Winston's Wish Foundation, Bright Start, and Junior League of Columbia. Winston's Wish Foundation would like to salute our inaugural class of Autism Ambassadors! Thank you Columbia Junior League and Bright Start! Your hard work and dedication made this new community outreach initiative a huge success! The goal of the project is to provide real world stimulation to children with autism that is both beneficial and educational while helping to increase community awareness of Autism Spectrum Disorder. Volunteers increase their knowledge and understanding of this complex developmental disorder. Then, by simply telling family and friends in their own social network about their experience, they will be advocating for the children that they have worked with. They will become true Autism Ambassadors in every sense of the word. Thanks again to all of our Autism Ambassadors for changing the life of a child with autism!

    Questions? Please contact us at info@winstonswishfoundation.com or by using the contact form to the right.

    Winston's Wish Foundation is proud to announce the launch of a new statewide initiative for families of children with autism. "Bundle of Books" is a collaborative effort between Winston'' Wish Foundation, Junior League of Columbia, Bright Start and the South Carolina Department of Disabilities and Special Needs to provide the families of newly diagnosed children with a collection of books to be used as their initial resource for understanding and dealing with a child with autism. Bundles are distributed with the help of our community partners, as well as area physicians, educators and professionals throughout the state.

    Periodically our books change due to availability or suggestions. If you have read a book that you think would be helpful to another parent, please share the title with us! Contact us through our Contact Form and we will add it to our list of books to be considered. If you have received a Bundle, let us hear from you. We love feedback! Send us an email at info@winstonswishfoundation.com and tell us what you thought of your selections. Questions? Please contact us at info@winstonswishfoundation.com or by using the contact form to the right.

    Teaching Toy Box

    Welcome to the Teaching Toy Box, where ordinary games and toys can change a child's life.

    While we are all familiar with the high cost of effective, evidence-based treatment for autism, many of us remain unaware of the hidden costs of Applied Behavior Analysis – materials needed to administer the programs. By accessing items through the Teaching Toy Box, Behavior Analysts will be able to assist families by providing the necessary tools to ensure the best outcomes for their children in therapy.

    Availability of every day toys and autism specific learning materials can have a significant impact on the depth, speed and quality of a home-based Applied Behavior Analysis (or ABA) program. Items like a dress-up costume can be used not only to teach a child with autism about occupations, but it can also be used to teach language through peer interaction and pretend play, sequencing, and identification. While simple games like Candy Land might be a fun family night pick for most of us, for children with Autism it can become a motivating and engaging way to master colors, counting, matching skills, turn taking, and receptive language. Even a simple wooden block sets can be used to teach matching, sequencing and imitation by replicating block design. All of these toys and others are fantastic for teaching leisure play skills, something that many of our children have difficulty learning and generalizing.

    Teaching Toy Box is a collaborative community outreach effort between Winston's Wish Foundation, the SC Department of Disabilities and Special Needs and USC School of Medicine Center for Disability Resources, and is available to children with autism residing in South Carolina who are receiving ABA services in a home-based program. Here, parents and professionals will find the materials they need in order to more effectively treat children with Autism Spectrum Disorders.

    How can you help? There are many ways to help support the Teaching Toy Box. Hold a toy drive, have a bake sale and donate the proceeds or become a Birthday Buddy! Winston's Wish also accepts cash donations and gift cards earmarked for this initiative. Simply click the Make a Donation tab or mail a check with your wishes attached. We will take care of the rest. Do you know a family who would benefit from participating in the Teaching Toy Box initiative? Download an application packet by clicking the download link below. Everything you need is included!

    [LINK TO APPLICATION] http://www.winstonswishfoundation.com/documents/ttb_app.pdf

    If you would like to make a tax deductible donation to support the Toy Drive, please click the Make a Donation button below. You will be redirected to PayPal's website where you can make a donation using a PayPal account or a credit card, and then you will be returned to this site. Thanks!

    [LINK TO DONATION VIA PAYPAL] https://www.paypal.com/webapps/shoppingcart?flowlogging_id=ee2d9afc4b1a&mfid=1528902249934_ee2d9afc4b1a#/checkout/openButton

    Questions? Please contact us at info@winstonswishfoundation.com or by using the contact form to the right.



    Current website layout - Donate

    Online Donations

    If you would like to make a tax deductible donation to support Winston's Wish Foundation, please click the Make a Donation button below. You will be redirected to PayPal's website where you can make a donation using a PayPal account or a credit card, and then you will be returned to this site. Thanks!

    Which program would you like to donate to?
    [Scroll Box with: General Fund, Teaching Toy Box, Education Series Scholarship Fund]

    (Optional) In honor or memory of: [Blank Space]
    [LINK TO DONATION VIA PAYPAL] https://www.paypal.com/webapps/shoppingcart?flowlogging_id=ee2d9afc4b1a&mfid=1528902249934_ee2d9afc4b1a#/checkout/openButton


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