A blog about resources for autism and care and treatment.

Wednesday, November 27, 2013

Let Our Life Songs Sing – Together

The autism community has been galvanized by the recent resignation of John Robison from his role at Autism Speaks, the largest and most powerful autism advocacy organization in the world, due to comments from founder Suzanne Wright. Robison, who has Asperger’s, acknowledges that autism confers “both gifts and disability on everyone it touches.”

Robison vehemently disagreed with Mrs. Wright’s description of autism as a “monumental health crisis” devastating the lives of millions of families around the world, leaving them depleted, both emotionally and financially.

Mr. Robison and Mrs. Wright, you are both right. I know individuals on the spectrum like Alex Plank, the founder of Wrong Planet, who are higher functioning and far more talented than most of my friends. But come to my offices at ACT Today! and look at the files from families who have received or are awaiting grants. There’s a different story to tell. Read about the grandparents living on Social Security who want behavior therapy for their 13 year old grandson, abandoned by his parents, so he can be toilet trained and learn to dress himself before they die, so in their words, he will have “less of a chance of being sexually molested in a home”. Read the requests of a single mother who works the night shift and moved back in the 2 bedroom house of her parents, who wants an iPad so her non-verbal child can type "I love you", words she will never hear spoken. Read the request from the father who wants to help his son stop the severe repetitive behavior of picking at his infected eye, which doctors will have to remove if something cannot be done.

These voices deserve to be heard as well, and it is downright shameful, that in a country as wealthy as the United States of America, that they need to apply to a nonprofit to get help.

As a nation, we need to become more accepting of autism and those with it, and we need a national plan to help the legions of families that have members who are lower functioning and cannot get the care and treatment they need. I once met with the Chairman and CEO of a major entertainment conglomerate, who generously agreed to run a public service announcement on autism awareness for the military family, then who asked me “Why are there so many of you? (meaning autism organizations) and why can’t you guys come together?” Indeed, why can’t we?

Monday, November 25, 2013

New autism grant program to assist valley families


Earlier this week, ACT Today! — a national nonprofit organization with the mission to provide care and treatment to children with autism spectrum disorder (ASD) — announced that it has committed $100,000 in grants for Coachella Valley families.

The announcement, made on Monday at the Coachella Valley Clinton Health Matters Initiative working group on seniors and disabilities, represents another positive action taken this year in a growing trend to increase access and reduce barriers to services and treatments for families with ASD.

Autism is the fastest-growing developmental disability in the United States, occurring in approximately one out of every 88 children. This makes it more prevalent than juvenile diabetes, pediatric cancer and childhood HIV combined.

Though ASD cannot be cured or outgrown, it is highly treatable, especially when diagnosed early. For this reason, access to diagnosis, intervention and support services is extremely important. In fact, the Autism Society reports that the cost of lifelong care can be reduced by two-thirds with early diagnosis and intervention.

Throughout California and in the Coachella Valley, many local service providers are dedicated to increasing awareness of ASD and helping families identify resources, so their loved ones have the support they need.

Despite these efforts, children with ASD in underserved communities (low-income, rural and/or immigrant) are likely to be diagnosed much later than their counterparts in affluent areas. Moreover, a report by the Senate Taskforce on Equity & Diversity in Autism Services found that barriers related to race, language, education level and/or where one lives result in stark disparities in public spending for regional center autism services.

For instance, in Orange County, an average of $16,686 in services is spent per child, whereas the average in the Coachella Valley is $4,920.

To improve regional center autism services in underserved communities, a package of bills was introduced in the state Legislature this year. The governor signed four bills, including AB 1232 authored by Assemblyman V. Manuel Pérez.

AB 1232 requires the Department of Developmental Services to assess the linguistic and cultural competency of service delivery in the state’s regional centers to ensure services are “people-centered,” as prescribed by law.

Also signed were laws to address how services are contracted through regional centers (SB 208), to set cultural competency training guidelines for regional center board members (SB 367) and to ensure that regional centers make a valid effort to develop individual program plans or family services plans in the language spoken by the family seeking services (SB 555).

While these new laws will improve access to services over time, ACT Today!’s Coachella Valley grant program can make a powerful and direct impact on local families right away. Beginning Jan. 1, families may apply for grants via the ACT Today! website. Paper applications in both English and Spanish can be requested by calling (877) 922-8863 or emailing info@act-today. org.

Grant funds can be used to defray the cost of treatment, assessments, and other necessary expenditures, including such things as nutritional supplements, adaptive communication devices, and household items that make a home safer for a child with autism.

To promote inclusion, ACT Today! has translated parent training and outreach materials into other languages and launched a new website and program known as ACT Today! Español. In addition to the Spanish-language resources on its website, ACT Today! Español’s bilingual program coordinator can assist families in accessing the services they need.

The grant program also leverages other recent investments in our region to address health disparities, such as the Clinton Health Matters Initiative and the Coachella Valley Building Health Communities Initiative.

We are excited by these developments and will continue to work to build out the system of supports to ensure that all children have access to the resources they need to fulfill their potential.

V. Manuel Pérez is the state Assembly member representing eastern Riverside and Imperial counties. He invites you to contact him through his Indio office at (760) 342-8047.

Nancy Alspaugh-Jackson is the executive director of ACT Today! More information about ASD and about the Coachella Valley grant program or can be found at www.act-today.org.

Original column posted in the Desert Sun on Nov. 21, 2013.