Below is a post from my friend Matthew Carey and IACC member about how Autism Speaks is partnering with a university and the South Korean American Autism Community. I think it is great that AS is moving from we care, we understand, yada yada to actual tangible plan of engaging with a minority autism community in outreach. It is a fact based on research that children who receive early autism intensive intervention have better outcome later on in life.
I am really glad that AS is doing this and I really hope they rethink their policy outreach efforts. My friendly, gentle advice for Autism Speaks would be:
1. In your state by state autism therapy legislation efforts – examine each state’s minority population then partner with them to advocate for both public and private insurance coverage for autism therapy. This way, both low income kids who are disproportionately minorities and higher income kids who are mostly caucasian can have a fair and equal chance for early ABA therapy. In other words, level the treatment therapy field for all kids because now AS lobbyist go to each state with one intention of only passing private insurance autism coverage. I think helping the haves and leaving the have-nots is cruel.
2. In your family outreach efforts grants – have a certain percentage that is allocated and is given to minority owned and operated autism advocacy agencies with measurable outcome and goals. Now Autism Speaks mostly funds mainstream Caucasian autism agencies which create unequal outreach efforts.
3. Finally, In your website which you only have English and Spanish language for the first 100 day kit – translate that into more languages in following the CLAS guidelines which does not mean translate everything word for word. For example, I know I asked your previous person in charge of family engagement Peter Bell if AS could do a DVD or CD in Somali that is spoken and explain the 100 day kit. Of course, he looked at me as if I asked for a kidney or something and did not understand CLAS (culturally and linguistically appropriate services) at all.
As usual above words do not reflect any agency, committee or candidate.
Below is a copy and paste from Matthew’s post at Left Brain/Right Brain Blog as he wrote it with no editing. Personally, I think Mr. Carey is amazing at IACC.
There are many groups in America where the autistics are under-diagnosed and underserved including many racial and ethnic minorities. A recent partnership (press release below) has been formed to address the issues of providing resources to the Korean American communities in the U.S..
FOR IMMEDIATE RELEASE
THE KOREAN COMMUNITY SERVICES, AUTISM SPEAKS, THE UNIVERSITY OF PENNSYLVANIA AND THE GEORGE WASHINGTON UNIVERSITY PARTNER TO PROVIDE AUTISM RESOURCES TO KOREAN AMERICANS
Launch Autism Hotline for Concerned Families
FLUSHING, N.Y. (April 10, 2014) – The Korean Community Services of Metropolitan New York, Inc. (KCS), Autism Speaks, the world’s leading autism science and advocacy
organization, the Center for Mental Health Policy and Services Research at the Perelman School of Medicine at the University of Pennsylvania, and the George
Washington University, today announced the establishment of the KCS Kids’ Line. KCS Kids’ line is a hotline service that provides referrals, information, and support for families
in the Korean community who are concerned that their children may have an autism spectrum disorder (ASD).
KCS will hold a press conference today at 3:00 p.m. ET at the Korean Community Services of Metropolitan New York, 35-56 159th Street in Flushing, to introduce the new
KCS Kids’ Line program. In attendance will be New York State Assemblyman Ron Kim, the Community Advisory Board members of the Project and local early intervention
providers. A two-year study, the New York Korean City Community Autism Project, funded by Autism Speaks, identified many barriers to early detection and access to
services for Korean families of children with autism.
Kwang S. Kim, the President of KCS, said, “KCS Kids’ Line service aims to help family and caregivers promptly respond to development issues and autism-related signs they
find in their children and get them appropriate services as soon as possible. We learned that early intervention is very important for children with autism because it allows them
practice and learn social and communication skills so they could better adapt to the society. I would like to thank University of Pennsylvania and Autism Speaks for
supporting this project for Korean-American community and hope that this program will help a lot of Korean-American children and their families affected by autism.”
KCS Kids’ Line Service Overview
The Asian-American Federation Census Information Center reports that Koreans are the third largest Asian group in the New York City, with a current population of more
than 100,000. According to the NYC Department of Education, Asians comprise 16% of New York City students; among those diagnosed with autism only 8% are Asian. This
difference suggests substantial under-diagnosis of autism in the Korean community. A recent study on the prevalence of autism in South Korea found similar results, with twothirds
of those on the autism spectrum previously undiagnosed and receiving no specialized services.
Under-diagnosis of autism in the Korean community may be driven by lack of awareness, stigma, and lack of access to linguistically and culturally appropriate
services. Language is a significant barrier among Korean-Americans seeking services in New York.
The goals of the KCS Kids’ Line are to ensure Korean-American children with autism in the greater New York area receive timely and appropriate services, to provide better
support for parents and families of those on the spectrum, and to promote autism awareness and greater access to resources about ASD.
The KCS Kids’ Line will serve, but not be limited to, parents of children from birth to 3 years of age with concerns about autism or other developmental delays. These parents will be able to call, e-mail or walk in to receive information. Autism-specific toolkits and resources that have been translated into Korean will be available for parents at the
event and also online at Autism Speaks’ website: http://www.autismspeaks.org/korean. KCS will continue to build knowledge about autism and related services in the greater
New York City area and develop relationships with schools and community organizations to connect older children and their parents with resources they need.
KCS has partnered with Autism Speaks, the George Washington University and the University of Pennsylvania to prepare the KCS Kids’ Line service. Autism Speaks
supports KCS by sharing their toolkits and resources, providing KCS coordinators with relevant trainings, education, and guidance. George Washington University and the
University of Pennsylvania helped KCS base the structure and content of the call line on previous research findings, translated existing materials for families into Korean, and
provided general guidance on the implementation of the call line. The University of Pennsylvania will evaluate the Kids’ Line service to determine its effectiveness in
increasing the number of Korean children with suspected autism who are referred for evaluation and services.
Autism is a general term used to describe a group of complex developmental brain disorders – autism spectrum disorders – caused by a combination of genes and
environmental influences. These disorders are characterized, in varying degrees, by communication difficulties, social and behavioral challenges, as well as repetitive behaviors. An estimated one in 68 children in the U.S. is on the autism spectrum.
Korean Community Services of Metropolitan New York (KCS) was founded in 1973 as the first community-based service agency in the Korean community. KCS is a non-profit
organization supported by government agencies, foundations, corporations and concerned individuals. KCS serves primarily but not limited to the Asian-American
immigrant population within the greater New York area. KCS’ objectives are to develop and deliver a broad range of community services to meet the various needs of the
community. To achieve these obj
ectives, KCS provides various professional community services within the areas of Aging, Community, Workforce Development, and Public Health.
About Autism Speaks
Autism Speaks is the world’s leading autism science and advocacy organization. It is dedicated to funding research into the causes, prevention, treatments and a cure for
autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families. Autism Speaks was founded in
February 2005 by Suzanne and Bob Wright, the grandparents of a child with autism. Mr. Wright is the former vice chairman of General Electric and chief executive officer of
NBC and NBC Universal. Since its inception, Autism Speaks has committed nearly $200 million to research and developing innovative resources for families. Each year
Walk Now for Autism Speaks events are held in more than 100 cities across North America. On the global front, Autism Speaks has established partnerships in more than
40 countries on five continents to foster international research, services and awareness. To learn more about Autism Speaks, please visit AutismSpeaks.org.
Sullivan (Matt Carey) | April 17, 2014 at 23:19
Again, no words here represent any agency, committee or candidate.
Idil – Somali Autism Mom & Minority Advocate