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Support Autism For Life

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The Autism Community, including my small family, needs your help today. When health policies and insurance laws are written, if Autism is not specified, it is almost always left out completely.  Without specifically including Autism For Life services and rights, millions will go without the care and rights they need.

I married my husband in 2001 with all of the hopes and dreams of family and future that most young people share when they first begin their lives together.  In a year, we were buying our first small home and preparing to bring our first child into the world.  She was a tiny fragile little girl who caused us the sleepless nights and self-doubt that comes with first-time parents and newborn babies.  Over the next two years we fell into our family routine and decided to add to the family.  Nicholas was born in 2005 just after the new year.  He was remarkably quiet.  So much so that when out for dinner or in public for other reasons, strangers often commented on what a 'good' quiet baby he was.  By 10 months, I would hold back the tears while others felt they were offering compliments. 

I am both a sister of a person who probably should have been diagnosed with Autism and I am a secondary teacher, so I knew. I sought the support of our pediatrician who asked me to be patient.  We followed my baby boy's progress in development until he was 15 months old before we called in the Autism Support Specialists. 

Like so many parents, I felt that the diagnosis was a sentence -- a judgement passed down that limited our hopes and dreams for our baby.  I was overwhelmed with the acknowledgement of all the things he may never be able to do.  What if he never walks?  What if he never speaks?  Will he learn how to read and write?  Does he understand what I'm saying to him? 

Through the twelve years of his life, with the support and services of amazing therapists and teachers, family and friends, Nicholas continues to make me a better mother and person every day.  He is funny and smart and curious and able.  He still has Autism, of course.  He always will.  But he is NOT AUTISM.  He simply has Autism as he has brown hair and blue eyes and a great sense of humor. He fully expresses unconditional love and he can walk, talk, read and write.  I'm humbled by his achievements -- no matter how "late" they develop.  I know we're lucky because so many other Autism families have to wait much longer to see the growth and abilities emerge from their loved ones. 

That doesn't change that others have proven time and again that they are not willing to see him fully.  They detect 'something different' about him and he becomes unwelcome and unwanted.  He doesn't get invited to friends' parties or peer events.  He doesn't have friends to invite to our home.   Recently and painfully, I became acutely aware of how much more difficult it will be for him as an adult because adults seem to much less accepting of other adults with autism than children seem to be to one another.  How will I be able to prepare Nicholas for success in a world -- a world in which I may not be able to always be with him?

You may be able to imagine my joy when I learned that a presidential candidate was offering the entire Autism Community a plan that would address so many obstacles that face them during their lifespan.  This plan encourages a space for my son to be fully accepted for all that he is and will be.  He and the millions of others with Autism may actually be able to achieve their God-given potential in this life.  Because of the following plan.  But?  First?  We need a president who will make it happen.

A CALL TO ACTION:

While you consider whether you were on the winning side or losing side or forgotten side of the election results, remember: only one candidate in our entire nation's history ever prepared and presented a plan to actually nurture those on the spectrum with the following plan.

I cannot allow this plan to die simply because my candidate did not win. So I'm going to figure out how to carry this baton forward. Help me? If you voted for Trump or Stein or Johnson or anyone else -- you especially -- help me help them. Today, right now, copy and paste the following in a letter drafted to the President Elect and ask him to adopt this policy in full.

Dear President-elect Donald J. Trump:

About 1 in 68 children has been identified with autism spectrum disorder (ASD) according to estimates from CDC's Autism and Developmental Disabilities Monitoring (ADDM) Network.

Most of these families living with this diagnosis need tremendous support throughout the entire lifespan of the individual living with Autism.

Today, please adopt and implement this comprehensive, wide-ranging autism initiative—including screening, diagnosis, treatment, services, safety and legal protections for individuals on the autism spectrum across the lifespan, steps to ensure they are treated with dignity, partnerships to help them secure employment, support for families and caregivers, and a commitment to increase research funding to deepen our understanding of autism.

More than 3.5 million Americans are believed to have autism spectrum disorder (ASD). According to a CDC estimate, one in every 68 children in the United States was identified as having ASD in 2010. The costs of treatment and services are beyond the abilities of most families. Improving support for children and adults on the autism spectrum and their families can vastly improve their lives and open the door to more sustainable costs for Medicaid and other public programs as services are delivered using integrated, community-based approaches. These proposals will not only help people with autism and their families but also will benefit others with developmental disabilities.

Our country must make supporting individuals and families with autism a priority—for the millions of people living with autism and their loved ones, and millions more who will be diagnosed in the future. Draft and implement a comprehensive plan that will:

1.  Conduct a nationwide early screening outreach campaign to ensure that all children, and in particular children from underserved backgrounds, can get screened for autism.
2.  Push states to require health insurance coverage for autism services in private insurance plans as well as marketplace plans offered in the state so that people with autism are not turned away.
3.  Launch the Autism Works Initiative to extend new resources and establish public-private partnerships that will connect people with autism with employment opportunities.
4.  Authorize the first-ever adult autism prevalence study in the U.S. so that we improve our understanding of how to identify, serve, and support adults on the autism spectrum.

Screening and Awareness

Diagnosis is the first step to helping those with autism. Earlier intervention for children with autism is correlated with better outcomes. However, while children can be diagnosed as early as age two, more than half of children are not diagnosed with autism until age five. Studies suggest that children who are African-American, Latino, or female are especially likely to receive late diagnoses, as early warning signs get missed. The American Academy of Pediatrics recommends early screening because it is low-cost, is non-invasive, and helps identify and provide resources for those children who might otherwise go untreated. Your new plan will:

Boost early screening rates with a nationwide outreach campaign. Direct the Department of Health and Human Services and the Centers for Medicare and Medicaid Services (CMS) to provide clear information to physicians and parents so that they know that all Marketplace health plans must cover autism screening at 18 and 24 months. Work with CMS and the states to ensure that families enrolled in Medicaid and their providers know that Medicaid must cover all medically necessary services for children, including autism screening at state-determined, evidence-based intervals under Medicaid’s Early and Periodic Screening, Diagnostic and Treatment (EPSDT) benefit.

Take steps to ensure physicians use best-practice diagnostic methods and encourage them to embed culturally-competent autism screening reminders into routine pediatric visits. Encourage states to provide timely reminders when they conduct other outreach to parents of young children – for example, by adding autism screening information to Medicaid renewal packets.

Promote multi-sector awareness campaign. promote multi-sector consumer, provider, business and health plan partnerships to increase awareness of the importance of early screening. Such interventions are especially critical in communities of color and rural communities, where access to health care and diagnostic services can be a major issue. This multi-sector campaign will improve awareness of the importance of screening and let parents know how they can get access to screening for their children. It will particularly emphasize reaching African-American and Latino families, low-income families, and women and girls, so people of all backgrounds can get screened.

Autism Treatment and Insurance Coverage

While more research is needed to improve treatments for autism, we must also make sure that individuals with autism have access to the existing interventions that can make a difference. However, many of these services require high-intensity, one-on-one assistance, which is expensive—and not always covered by schools or insurance. Even when autism services are covered, they may be limited based on patient age, type of service, cost, hours of treatment, and type of plan. When treatments are not covered, the cost can place a huge burden on families, or lead to children not being able to access effective treatments.

Improve access to autism services in the ACA marketplace and through private health insurance. Under the Affordable Care Act, health insurance offered through the health insurance marketplaces must include certain essential health benefits, including health care services that help you keep, learn, or improve skills and functioning for daily living (called “habilitative services”) such as physical or occupational therapy. More than 30 states have now defined “habilitative services” to include autism services. In addition, states have the authority to require that private insurance plans in the state cover autism services. More than 40 states have now passed a requirement for autism coverage in the private market.

Work with states to encourage all states to include autism services, both behavioral and developmental, in requirements for health insurance plans offered in the state, on exchanges as well as in the private market. Work to strengthen the coverage offered so that children, youth, and adults with autism and their families can access a comprehensive range of behavioral and developmental services. Massachusetts is an example of a state that is leading the way in these areas. Ohio is an example of a state that must act so that private insurance covers autism-related services, while Virginia is an example of a state that must act so that residents can access autism-related services through the ACA marketplace. Finally, work with the Navigator programs established by the Affordable Care Act to ensure that families are aware of their rights and understand the services they are entitled to receive, and explore options to improve the portability of benefits when people move to another state.

Increase state compliance with Medicaid coverage requirements for children with autism and other developmental disabilities and create an autism-service-access scorecard that makes state Medicaid compliance publicly accessible. Under Medicaid, states are required to cover all medically necessary treatments for autism and other developmental disabilities, yet not all states are fully compliant. Direct CMS to set an expeditious timeline for states to confer with all stakeholders and identify necessary changes to existing state regulations and policies to ensure compliance. Direct CMS to assess and publish states’ compliance at the end of that timeline in a publicly available autism-service-access scorecard that allows for easy comparison across states. Direct CMS to provide technical assistance to states to improve access for children to covered autism services, including behavioral and developmental services, assistive technology, and home and community-based services. Once the scorecard is created, explore the possibility of expanding it to assess state support for autism services beyond what is required to comply with Medicaid – including the wait times and wait lists that keep so many people from accessing services.

Work with the Department of Defense to ensure military families have full access to autism services through TRICARE, the health care program dedicated to service members, veterans, and their families. Through the Autism Care Demonstration program, TRICARE provides a wide range of autism behavioral and developmental services. Work with the Department of Defense to ensure that military families are aware of these benefits, know where to go to receive services, and can access coverage that follows them when, as so often happens, they must re-locate for a new assignment.

Safety and Services for Children and Youth

Many children with autism are subject to abuse, injury, or harassment that threatens their right to safely attend school. Children with autism are particularly likely to be subject to dangerous practices such as the use of mechanical and chemical restraints (locked in handcuffs, held in tight holds, and given drugs) and seclusion (locked in often small and windowless rooms). Too often, extreme interventions are written into individualized education plans as first resorts and executed by staff with insufficient training, sometimes leading to injury or death. Parents are not always notified when such interventions are used on their children, and the children may not be able to communicate what happened. Another needed protection is protection from bullying: Children with disabilities are bullied at higher rates, and autistic children with communication barriers may be especially vulnerable and unable to report bullying or seek help. This new plan will:

Enact the Keeping All Students Safe Act, which bans the use of mechanical and chemical restraints, and physical restraints that restrict breathing; restricts the use of restraint and seclusion to situations in which there is a risk of imminent physical injury to a student or others; requires reporting to parents if these are used on their children; prevents these practices from being written into IEPs as planned interventions; and requires districts to have a sufficient number of staff trained in crisis intervention and behavioral management techniques.

Protect children with autism from bullying in their classrooms. Children with disabilities are more likely than other children to be bullied, and survey data suggests up to two-thirds of children with autism may experience bullying. Not only are children with autism more likely to be targeted for bullying, but they may be less able to communicate what has happened to them and seek help. Sometimes schools respond to a child being a target of bullying by removing them from general education classrooms and placing them in segregated settings – in violation of their rights under the Individuals with Disabilities in Education Act (IDEA). Ensure that the U.S. Department of Education enforces the strong guidance that has been issued to states and school districts that students with disabilities, including autism, must be protected from bullying and allowed to remain in their classrooms.

Community Supports and Services for Individuals Transitioning into Adulthood

The landmark 1999 ruling in Olmstead v. L.C. codified the right under the Americans with Disabilities Act (ADA) for individuals with disabilities to live in the community rather than institutions, and to gain access to reasonable accommodations to support their independence. Since passage of the ADA Amendments Act of 2008, people with autism have received the ADA’s protections against discrimination in employment, government services, public accommodation, and other kinds of discrimination; however, they are unemployed at much higher rates, with more than 50% of youth with autism not obtaining employment or higher education in the two years following high school graduation. That’s a worse educational and job access rate than for young adults with many other types of disabilities. A recent survey of adults with autism found that the vast majority wanted to live on their own or with a roommate. To do so, many need access to support services in the community or their home, transportation, subsides for housing or care, and other assistance. As critical as it is to help individuals with autism through the first 21 years of their lives, we also need to ensure that they have the support they need through the rest of their lives.

Launch a new Autism Works Initiative consisting of a post-graduation transition plan for every student with autism aging out of school-based services and a public-private partnership with employers that is designed to grow to include hundreds of firms over time. This initiative, which will bring together leaders in secondary and post-secondary education as well as in the private sector and will draw on insights from social scientists as well as non-profit institutions, will foster new pathways to adulthood for individuals with autism so they can support themselves and build the lives they want.

The importance of a transition plan is based on the fact that young adults with autism are much less likely than their non-disabled peers as well as peers with other disabilities to be employed after high school. While federal law requires schools to develop post-high school transition plans for youth with autism by age 16 (and previously required them by age 14), recent data indicates that more than 40% of these young people did not have plans filed on time. With tens of thousands of students with autism aging out of school-based services per year, this is a critical issue. Direct the Department of Education to work with schools to ensure that every young adult with autism has a transition plan on time so they are prepared to graduate and secure employment or seek further education. In particular, specify that these transition plans must be suited to the specific needs of individuals with autism and connect them with the post-secondary resources that will enable them to make the most of their lives.

The importance of public-private partnerships is based on our knowledge that so many people with autism who are unemployed do have the ability to contribute to the success of a business – they often have strong abilities, are thorough workers and are especially appreciative of the structure that employment provides. What the employer needs to do is to simply design the job in a way that increases their chances of performing well by tapping these abilities and providing supports for social and sensory stresses. That is why this Autism Works Initiative, building on proven success stories like Project SEARCH, will be so focused on getting more employers invested in providing competitive integrated employment opportunities for people with autism. This development would be good for the individuals, good for the firms, and good for America. The Autism Works Initiative will start with a core set of firms and will act to scale the number and reach of those partnerships over time.

Combine the Autism Works Initiative with new legislation to fund employment demonstration grants for individuals with autism and other disabilities. Push for passage of the bipartisan Transition to Independence Act, which would establish demonstration programs in 10 states focused on helping people with disabilities expand employment opportunities. These efforts will build on the recently-enacted Workforce Innovation and Opportunity Act (WIOA), which mandates that state vocational rehabilitation agencies set aside a certain percentage of their federal funds to support students with disabilities as they transition to post-secondary education and employment.

Increase housing opportunities for autistic youth and adults. Secure housing must go hand-in-hand with secure employment. Fund projects that help individuals with autism live independently in their communities and invest in those community-based housing programs that are most effective, such as the newly-reformed Section 811 program authorized by the Frank Melville Supportive Housing Investment Act of 2010.

Caregiving

Caring for people with autism presents real challenges and costs, and parents of children with autism often worry about how they will support their loved ones as they age. The ABLE Act of 2014 authorized states to create tax-deferred savings vehicles for people with disabilities—modeled on 529 education savings plans—to allow families to save for health, living, support services, and other expenses. Additionally, savings in these accounts can be excluded from asset tests in SSI, Medicaid, and other federal means-tested programs. More than thirty states have enacted ABLE legislation to allow their residents to access these savings accounts. Several states, however, from Arizona to Georgia to Oklahoma, have yet to pass the needed legislation.

Encourage all states to enact ABLE legislation and ensure consumer protection for ABLE account beneficiaries. Encourage the remaining states to step up and will provide technical assistance to help them so that any American can set up and benefit from these savings accounts. For those states that have already enacted the legislation, work with state officials to raise awareness of these accounts and increase the take-up rate, with methods ranging from providing notices to families alongside tax information to appending enrollment information to Medicaid documents. Finally, work with self-regulatory organizations identified by the SEC to ensure proper stewardship of all funds that individuals and families deposit in these accounts.

Provide new support to caregivers. Provide new funds through the Developmental Disabilities Act to expand support for family members and other caregivers providing long-term care for those with autism and other disabilities. Title II of the Act authorizes competitive grants to states to foster a “statewide system of family support services for families of children with disabilities,” and Title III authorizes new funding to train and provide scholarships for caregiving and support workers. Yet in the years since enactment, these programs have received minimal funding. Build on the robust agenda to help those in the caring economy that she previously outlined by expanding support for families and caregivers for those with developmental disabilities.

Research

America needs to invest more in autism research to better understand child brain development and the genetic linkages for autism, create better diagnostic tools, and improve treatments and services for people on the autism spectrum and their families at every stage of life.

Significantly increase funding so that the government can invest more in autism research. Announce the first phase of your plan to significantly increase government investment in biomedical research: an initiative to address Alzheimer’s disease. Build on that initiative by increasing research funding across the board. This will make a vital difference for a range of autism-related research, from studies that improve the quality of patient services for people with autism, including participatory action research on subjects like employment and housing, to more basic research that identifies genetic markers, maps child brain development, and generates new insight into the workings of the central nervous system. This basic research will draw on work across sectors by building on what we are learning from bold new private and non-profit efforts on genetic mapping, including the MSSNG genome sequencing project and open data platform, the Simons Variations in Individuals Project (VIP), and the NIH Autism Sequencing Consortium, teaming up with their researchers to deepen our understanding of autism.

Call for the first-ever adult autism prevalence and needs study. While the Centers for Disease Control has long measured the incidence of autism in 8-year old children, no comprehensive study of the prevalence and needs of autism in adults has been conducted in the United States. When the United Kingdom conducted an adult prevalence survey, they learned valuable information regarding the needs of adults on the autism spectrum that has helped them craft and improve services. Instruct the CDC to conduct the United States' first-ever population level survey of adults on the autism spectrum.

Enforcement

A number of the above proposals rely on strengthened enforcement of current law in key areas. In addition to these specific enforcement levers, pursue a broader enforcement agenda that protects the rights of people with autism: to ensure that children who are diagnosed are referred for services, to enable them to receive the assistive technologies to which they are entitled under the law, to guarantee the protections of mental health parity legislation and of the Americans with Disabilities Act, and to expand funding for the protection and advocacy groups that play a pivotal role in sustaining the progress we have made.

Ensure states meet their obligations under IDEA’s Child Find Program to identify, screen, and refer children with disabilities for services. Racial, gender, and income disparities in diagnosis rates and age of diagnosis show that we can and must do better to ensure that all our children have the same access to early intervention services through timely referrals. The Individuals with Disabilities Education Act (IDEA)’s Child Find Program requires states to have systems that locate and refer children with disabilities for early intervention services. These efforts must include public awareness campaigns, referral and screening systems, and interagency coordination, and include not only parents and doctors but also daycare providers and preschool teachers.

Push the Department of Education to better monitor state compliance with Child Find and provide any technical assistance local districts need to improve policies and practices, with an emphasis on improved outreach to and assistance for underserved populations.

Ensure access to assistive technologies. For children and adults with autism who struggle with verbal communication, assistive technologies can help them better communicate with others and achieve greater independence. These tools can range from communication books and picture boards to iPads and text-to-voice devices. Under IDEA, school-aged children should receive access to assistive devices or technology to help them overcome communication barriers. Children and adults with autism should be able to receive coverage for medically necessary assistive technology through their health insurance. However, variations in state law and enforcement can result in people with autism struggling to gain access to these important tools, especially when they are made available as apps in consumer mobile or tablet computing technology, or losing access to effective tools when they move between schools.

Push for stronger oversight and enforcement of equal access to assistive technology and will include an evaluation of access to assistive technology in the state autism scorecard.

Enforce mental health parity protections. There is evidence that people with autism may have greater mental health needs than the general population, and as a result need access to mental health services. After years of advocacy, Congress enacted the Mental Health Parity and Addiction Equity Act in 2008. But seven years later, the bill is still inconsistently enforced by a patchwork of regulatory authorities. As president, evaluate state-level enforcement of mental health parity and, in instances in which states fall short, will direct HHS, the Department of Labor, and the Internal Revenue Service to enforce mental health parity to their full authority in their respective spheres.

Continue vigorous enforcement of Olmstead. Direct the Department of Justice to build on President Obama’s record of strong enforcement of Olmstead’s guaranteed access to reasonable accommodations and supports to allow adults with autism as well as other disabilities to live independently in their communities. Ensure that Olmstead enforcement remains a top priority for the Justice Department, and that DOJ collaborates with HUD, HHS, and Labor to break down the barriers that people with autism face. This will in turn be part of broader efforts to ensure that the Americans with Disabilities Act, including the 2008 amendments, is enforced so that individuals with autism can benefit from the civil rights protections of this landmark law. In the upcoming year, continue to discuss the importance of protecting the rights of all disabled individuals.

Dedicate new funding to autism protection and advocacy. As proposed in Clinton's 2007 bipartisan legislative proposal, the Expanding the Promise for Individuals with Autism Act, push for authorization and funding for an autism protection and advocacy program, creating a dedicated funding stream for federally-funded protection and advocacy agencies to protect the rights of individuals on the autism spectrum. These efforts would mirror the Protection and Advocacy for Individuals with Mental Illness (PAIMI) and Protection and Advocacy for Developmental Disability (PADD) programs.

Sincerely,
A True Friend and Supporter of the Autism Community

_____________________________________

The following is a list of sources that reflect the broad support of the Autism Community for this plan.

Hillary Clinton's Plan to Support Children, Youth, and Adults Living ...
https://www.hillaryclinton.com/briefing/factsheets/2016/01/05/hillary-clintons-plan-to-support-children-youth-and-adults-living-with-autism-and-their-families/
Jan 5, 2016 ... Hillary Clinton's Plan to Support Children, Youth, and Adults Living with Autism ... Today, Hillary Clinton is announcing a wide-ranging autism ...
Autism | Hillary for America - Hillary Clinton
https://www.hillaryclinton.com/issues/autism/
Expand insurance coverage for autism services. Hillary will improve access to autism services through healthcare.gov and private health insurance plans.
Hillary Clinton's Autism Plan Suggests Times Are Changing - Forbes
http://www.forbes.com/sites/emilywillingham/2016/01/07/hillary-clintons-autism-plan-suggests-times-are-changing/
Jan 7, 2016 ... Hillary Clinton's got an autism plan, the only candidate so far to release one. Indeed, when I reached out to and checked into various ...
Autism: Can candidates match Hillary Clinton's plan? - CNN.com
http://www.cnn.com/2016/01/10/opinions/perry-autism-hillary-clinton-plan/
Jan 10, 2016 ... David Perry: Only Hillary Clinton has set forth a detailed plan so far; advocates are watching to see who else does.
Scientists, advocates hail Hillary Clinton's autism plan | Spectrum
https://spectrumnews.org/opinion/cross-talk/scientists-advocates-hail-hillary-clintons-autism-plan/
Jan 12, 2016 ... Hillary Clinton made political history last week by proposing a plan to ramp up autism research and services as part of her presidential bid.
Hillary Clinton outlines autism proposal, calls for nationwide early ...
https://www.washingtonpost.com/news/post-politics/wp/2016/01/05/hillary-clinton-outlines-autism-proposal-calling-for-nationwide-early-screening-initiative/
Jan 5, 2016 ... Ari Ne'eman, president of the Autistic Self Advocacy Network, said he welcomes Clinton's plan, especially its focus on solving problems faced ...
Hillary Clinton's autism platform is transformational – and ...
https://www.theguardian.com/commentisfree/2016/jan/06/hillary-clinton-autism-plan-disability-transformation
Jan 6, 2016 ... Hillary Clinton<br>Democratic presidential candidate Hillary Clinton smiles ... Clinton's autism plan, announced Tuesday, is well-informed and ...
Hillary Clinton announces new autism plan | News | Autism Speaks
https://www.autismspeaks.org/news/news-item/hillary-clinton-announces-new-autism-plan
Jan 5, 2016 ... Democratic Presidential candidate Hillary Clinton today announced a plan on autism at a town hall in Sioux City, Iowa. Autism Speaks urges all ...
Clinton rolls out plan to tackle autism - POLITICO
http://www.politico.com/story/2016/01/hillary-clinton-autism-proposal-217353
Jan 5, 2016 ... Hillary Clinton issued a wide-reaching proposal Tuesday to address ... Clinton's plan would push states to require insurers to cover autism ...
Hillary Clinton Announces Plan to Address Autism | TIME
http://time.com/4167433/hillary-clinton-autism/
Jan 5, 2016 ... Hillary Clinton is proposing on Tuesday a new autism initiative that would direct spending on screening and research, as well as require private ...

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