I'm a mother of a daughter, diagnosed with an autism spectrum disorder and I'm diagnosed with an autism spectrum disorder myself. I am passionate to see funds be released to provide more services of different kinds for adults with autism as well as to see covered services for all families of children with autism, including low-income families and minority families. Currently, the diagnostic and support services that do exist are for those 21 and under, and those are available usually to families able to pay or who have quality, private insurance. Sometimes states may provide limited coverage for these families. As for adults with autism, virtually no diagnostic or support services that families can access or afford. In my state, adults like myself who yearn for an autism evaluation must wait a year in advance if we must depend on insurance; if you are 21 or over, support services are almost nonexistent. In a nutshell, this petition calls for a comprehensive package of covered services for all persons with autism in the US.
Goal of Petition: The goal is to obtain funding for mostly support services but also for research, for persons of all ages, races, incomes and walks of life who have suspected or diagnosed Autism Spectrum Disorders (ASDs). Currently, most autism services are available only to autistic persons under age 21 whose families are able to pay for these services. Services for autistic adults are very limited or available only in certain areas in the US. Because of this, far too many people of all ages even in this age of awareness, continue to "fall between the cracks." This petition calls for comprehensive coverage for all autistic persons.
Currently, there are $931 million available for autism funding; this includes $693 million in the Combating Autism Re-Authorization Act (CARA), signed into law by President Obama in September 20, 2011 but never appropriated (http://www.autismspeaks.org/advocacy/federal). This also includes $238 million in autism projects that expired at the end of September 2012 (http://autismspeaks.org/advocacy/advocacy-news/19-million-risk-new-autism-research, Sept. 19, 2012). What is needed is for these funds to be re-newed, appropriated and then re-allocated to include adults with autism.
Thank you for considering this petition. If you wish to find out more feel free to look at my letter to the US President and the US Congress below. Your support means very much to every person who is touched by autism!
Release Funds for Services for All Persons With Autism to each of the 50 states. Goal: Allotment of funds to all 50 states for a variety of affordable diagnostic, research and practical support services that, in large part, do not yet exist for adults and shall be oulined a little later in this letter. We also seek funding of the 2011 Combating Autism Re-Authorization Act (CARA)
and re-allocating its proposed research funds to services for children of low-income or minority families. Such re-allocation can be done by sending these funds to each of the 50 states so these states can offer funds to existing services for children with suspected or diagnosed autism spectrum disorders (ASDs). Such funding to already existing services will expand autism services and make them more affordable and accessible to so many children of low-income or minority families who currently cannot afford or access these services.
Currently, a total of $931 million have been allocated to autism. $693 million, not yet appropriated, have been allocated to the Combating Autism Re-Authorization Act, which was signed into law by President Obama in September 20, 2011 (http://www.autismspeaks.org/advocacy/federal). And $238 million have been allocated to autism projects but expired in September 2012 (http://www.autismspeaks.org/advocacy/advocacy-news/19-million-risk-new-autism-research). We ask that these CARA be fully funded for all children with autism and that funds set aside in 2012 and which have expired, be renewed and reallocated for services for adults with autism. As we believe that more $$$ be spent on helping persons with autism and less be spent on research, we ask that you consider taking $$$ out of CARA that are set aside for research and reallocate these for badly needed services for children with suspected or diagnosed ASDs who are from low-income or minority families.
I'm a mother of a daughter diagnosed with an autism spectrum disorder and a person myself, with what I am convinced is an undiagnosed autism spectrum disorder who is still in search of answers for my life. I am passionate to see funds be released to provide more services of different kinds for ALL persons with autism, whatever their income, race, age or walk of life. I also call for funds for services for all families of children with autism, including low-income families and minority families. When many of us think of autism, the first picture that comes to mind tends to be of a child. There are many, growing funds for a wide variety of autism services for children and teenagers. Enthusiasm is high for early childhood intervention. During the school years, children and teenagers are entitled to a wide variety of special education services, if they are fortunate. This entitlement ends when they reach the age of majority. After the age of 18, adults with autism and the families who care for them, are pretty much on their own with limited direction, support or resources. Autism, whether we speak of classic, more severe autism or the higher-functioning forms of autism, is a lifelong developmental disability. Even when children are fortunate enough to get early childhood intervention and make strong progress because of it, they do not "outgrow" autism and likely continue to need support services.
First of all, many services for persons under age 21 already exist in all 50 states but most of them are unaffordable and inaccessible to many children from low-income or minority families who lack cash or quality insurance. While research has a role in dealing with autism, services are far more important. Therefore, many research funds from the 2011 CARA need to be appropriated and then reallocated to services for low-income or minority children, which can be done by sending these funds to all 50 states so these states can fund already existing services for individuals under age 21.
For the sake of many autistic children who have or who will "age out" of services they are entitled to, we are requesting that you release funds to each of the 50 states so that many more services will become available to adults with autism, whatever level of their function. According to Lisa Jo Rudy of the About.com (for Autism) website, in the 10 years between 1993 and 2003, there was an 800% increase in the number of US schoolchildren who were diagnosed with an Autism Spectrum Disorder (May 12, 2009). Between this and the fact that man older adults, including myself, are seeking or are being diagnosed later in life with Autism Spectrum Disorders, this population is just increasing. And adults with autism need and we request that funds be sent to all 50 states for:
1) Job-training that is geared to adults with autism. Fully 70 percent (and is estimated to be a whopping 90 percent!) of adults with autism are either not employed or work in jobs that do not use their strengths or talents. This unemployment rate is worse than for any other disability group! Job-training does exist but is not geared to the unique challenges of autism. Autistic adults often lack social skills and independent living skills that are essential to getting and keeping jobs. Many can and should be supported and empowered to work and contribute to society so they need not have to use govenment programs, as many do now. And this is what most of them want!
2) Business loans. Many adults, with or without support, can start their own small businesses; this would empower many adults who would rather work for themselves than others. Such loans are said to be available to those who use government programs like Social Security Disability, but many autistic adults do not qualify for government assistance because they are undiagnosed and have no other documented disabling conditions.
3). More training for psychiatrists, psychologists, neurologists, and others who may diagnose autism spectrum disorders in children and teens but who are untrained to evaluate adults for autism. There are growing numbers of adults, like myself, who grew up with clusters of developmental issues that could not be treated as autism spectrum disorders because the diagnosis did not exist. Professionals in the mental health and related fields, who are qualified to evaluate and treat children and teens, need to receive training to diagnose and treat adults of all ages. This could change the lives of many like myself, who had to grow up feeling robbed of childhoods and proper educations and, worst of all, have been made to feel like "freaks of nature" because our differences never were identified and this can give us the priceless gift of peace, a community of diagnosed persons where we will know the priceless sense of identity and belonging, and possibly open doors for future services.
4) More research which would include adults, especially when exploring the genetics of autism; such research could bring us closer to uncovering what causes autism. Such research can lead to an official diagnosis for some adults or to other positive outcomes.
5) Respite care for caregivers who live with adults with autism. There was a heartbreaking instance of a mother who had killed her adult son with autism. Caregivers whose adult autistic children can't live on their own may be tempted to "snap" and harm, even kill, the autistic person whom they are caring for. Respite care can prevent such tragedies!
6). Home help program that pays personal caregivers who assist certain autistic adults to live idependently in their homes and to assist with life skills like personal care, shopping, medications, doctor's appointments, grooming, eating, feeding, laundry, and toileting.
7) Funds for existing, isolated, services for adults with autism, which are commendable and which normally also serve other adult disability groups. One example of this is the Minnesota State University which serves students with a variety of disabilities and includes services for students with autism; their website is at: http://www.mnsu.edu/dso/faculty/students/asperger.html. Another example is Opportunity Enterprises, a nonprofit which serves people of all ages with developmental disabilities, including autism. Their website can be found at: http://www.oppent.org. I am sure that there are other such services, both at the state level and among nonprofits.
8). Name a federal "autism czar" who will oversee all autism efforts at the federal, state and local efforts and to ensure implementation of exiting and new autism efforts. This would include new services for adults with autism.
9). Impose strict limitations on the use of restraints or seclusion rooms in public schools to prevent abuse and to protect children with autism or other special needs.
10). Provide funds for universal and ongoing nonviolent crisis intervention training (NVCI) training for all employees of public schools, whether employed through public or private companies. THis would benefit all students as well as those with autism.
We're aware that the budget is tight. But we know that autistic adults, when you also include those of us with suspected/undiagnosed autism spectrum disorders, are a large population. And more and more children will keep "aging out of" services. Services for children with autism need to be expanded to cover those whose families are unable to pay for autism services, whether by insurance or by cash. Many children continue to "fall between the cracks" because of insufficient insurance for autism. As for adults, very little exists for them. What will happen to them? Most of them will likely experience some degree of failure and unhappiness unless the US government steps in and helps with this population. You will need to decide how to allocate funds for thse purposes and all this will cost more in the beginning. But, in the long run, many dollars can be saved through many more people being put on the tax rolls, people not having to use so many mental health services, and people making contributions to society. All this will help create a more welcoming world for the autism community.
This is a tall order. But these issues confronting families and individuals in the autism community are not going away. Something needs to be done to avert social problems like dependency on government programs, homelessness, and even crime due to undiagnosed/untreated autism in adults or because of lack of services for the many who are already diagnosed. Such support, diagnostic and research services will open up many more jobs, from entry-level to professional. This should stimulate the economy.
We thank you and we commend you for all that is currently being done for children with autism and for most disability groups, of all ages, through your funding and your laws. We only ask that autistic adults be included.
Thank you for considering this serious matter that impacts all of us. Implementing thse measures will cost us all something but, in the end, will richly reward us all through many more contributing to our society, who will benefit from becoming a more welcoming society.