The Autism Society’s 2013 Advocacy Agenda

By Autism Society

The Autism Society has a simple goal: To improve the lives of all living with autism.  In order to improve lives, we focus on ensuring that all individuals with autism and their families have access to the help they need. When needs are met, people with autism can maximize their dignity and independence and enjoy improved quality of life.

While there has been significant progress since the Autism Society’s founding in 1965, so much more needs to be done to create a society where each person, regardless of abilities, is provided equal opportunity.  It comes down to this: The manner in which we provide services must no longer place unnecessary obstacles in the path to that success.

In 2013, the Autism Society, along with 107 affiliates, are pursuing the following points: 

Access to services

The Autism Society defines services ranging from early intervention and caregiving, to strong educational programs, employment training, residential care and other therapy.

Today, people with developmental disabilities face long waiting lists just to receive the basic services they are entitled to through Medicaid Community Services support. People are sometimes on waiting lists for as long as 10 years! When people do not have the resources to access private services, they end up with nothing as they wait in line.

Services are important for individuals with ASD. Early intervention significantly improves outcomes and can reduce costs of care by as much as two-thirds over a person’s lifetime. 

However, there are several ways to address this issue of waiting lists:

Portability of Medicaid Eligibility: Medicaid gets significant funding from the federal government, yet these dollars are administered on a state-by-state basis. The Autism Society believes this state-by-state approach creates unnecessary duplication of efforts, resulting in wasted administrative costs.  The rules for eligibility are often the same from state to state. One should not have to reapply for Medicaid if one moves across state lines. 

Criteria for receiving government services must be broader. Far too often, individuals can only qualify for assistance if they fit into specific criteria that do not recognize differences in need and ability. The government must broaden its eligibility requirements to accommodate more people on the autism spectrum.

Government funding must be targeted for services that are outcome-based and results-oriented according to the individual’s needs and abilities. Currently, funding often only assures maintenance of condition without really examining how best to achieve positive and measurable progress that results in an improved quality of life.  In the end, the Autism Society believes this outcome-based approach will save significant dollars by helping people reduce lifelong reliance on services and bringing others off the waiting list. 

Public and private sector services providers must work more closely together. The Autism Society believes there should be a process to facilitate private entities that want to match Medicaid, or even match funds from an individual with autism or his family, in some cases.

The shortage of adult services must be acted on as an urgent national issue. Among  these, training to help individuals attain meaningful employment is critical. Vocational rehabilitation must focus on outcomes that relate to increasing the low 20.5 percent labor force participation rate for individuals on the spectrum.

Health insurance and the Affordable Healthcare Act

During the past few years, progress related to health-care coverage has enabled more people with autism to obtain the services they need.  The passage of the Affordable Health Care Act has increased the ability for individuals to get insurance coverage and eliminated circumstances when preexisting conditions resulted in denial of services.

However, there is not yet a final solution.  Autism coverage is only beneficial for individuals whose plans are covered under the state law. In addition, low-income areas often lose due to the economy of scale needed to balance expenses covered by insurance or private funding for services such as ABA therapy.   If insurance is not available or affordable the result is that services remain inaccessible or unobtainable to lower income communities. 

It also remains unclear how each state will define which services are included in its coverage program. The exchange program for each state will define coverage for those unable to secure insurance through an employer or on their own through the private sector. Most states do not currently include autism in such exchange service availability, and some of the exchange plans are being proposed with very high deductibles.  Since each state has its own exchange plan, we cannot assume autism is covered across state lines. Specifically, the Autism Society believes insurance must cover more therapies than ABA therapy, which has a very high success rate, but is not always effective for every individual on the spectrum.

The “Haves” and “Have Nots”

A Harvard University study found that it can cost as much as $3.2 million to care for one individual significantly affected by autism. This is unrealistic for families in America today. We know that individuals who receive early and intensive therapy tend to have improved outcomes later in life. The well-being of an individual should not depend on economic status.

Discrimination

Individuals with autism face regular discrimination throughout their lives.

Autism is a condition that remains unrecognized or, at best, not fully acknowledged as a condition that causes a person to experience significant and unlawful discrimination. From denial of basic rights to a quality public education, or access to employment, it is common for a person with autism to face regular discrimination throughout their life. With unemployment rates sometimes estimated to be as high as 70 percent for adults with ASD, there is no question that equal access to opportunities does not exist for many. Denial may come in the form of: educational systems that do not adequately prepare students for competitive employment after graduation, unwillingness of an employer to consider an individual with ASD as a qualified candidate for a position, or resistance to provide the necessary accommodations for  employment of adults with autism. This kind of discrimination is pervasive throughout society and can be witnessed in regard to housing, transportation, access to recreational activities and other components that make a person an integral part of their community. False stereotypes and other factors that lead to lack of understanding and result in diminished community acceptance must no longer be allowed. Our nation must immediately address this discrimination of people living with autism and other developmental disabilities. Our nation has done so much throughout history for disenfranchised groups and individuals with less visible disabilities should be no exception.

Institutional Bias in Long-Term Care Policy

In 1999, the World Institute on Disability hosted a conference, Personal Assistance Services in the New Millennium,” focused on eliminating institutional bias. Delegates stated that ”government policies and funding should not perpetuate the forced segregation, isolation, or institutionalization of people with disabilities of any age.” Disability used to be regarded as a condition that prevented people from participating in most activities of daily life and living safely in our communities. Many with disabilities were segregated and isolated from society, housed in large institutions without consideration of appropriate, less restrictive alternatives. Traditional Medicare and Medicaid funding streams provided strong financial incentives to long term care provided in aggregate settings (e.g. nursing homes, rehabilitation centers, hospitals, etc). Legislation from the late 1960s related to Medicare and Medicaid guaranteed payment for institutional services. This means that nursing home care in this country is an entitlement — any person eligible for nursing home services cannot be denied provided there is space available. Medicaid waivers and ‘Money Follows the Person’ initiatives have provided substantial progress but community-based services do not have this entitlement status. There is still a strong institutional bias in federal and state policies and funding, which provide finance to group homes and agency-provided residential services and to employment training in the form of sheltered workshops.

The financial eligibility criteria for receiving services in the community should not be more stringent than for comparable services provided in institutional settings. Medicaid and SSI asset and income limits for a person receiving services in the community should allow that individual the greatest opportunity to remain in the community and not be forced into an institution. Income limits should not encourage dependence on government support but rather allow an individual to have the financial stability to pursue independence, fulfillment and productivity. Social services should not force people to live in poverty; they should encourage work, family and savings (all common American values) and assist people to reach to their maximum potential and be empowered, self-sufficient citizens who contribute to their community.

Research

Research is a critical component to understanding the autism spectrum as well as gaining greater knowledge as to which treatment is most responsive to particular individuals. But, in these times of national fiscal strain, we must balance the need for research against the growing needs of those who are seeking services and most importantly those who are forced to wait due to limited funding or availability of appropriate services. Our country can engage in meaningful research endeavors while meeting the needs of those living with autism today, but only through a comprehensive review of allocation of funds that is based upon not only need but the delivery of measurable outcomes that improve people’s lives.

Diagnosis

We all know that the earlier a diagnosis, the better it will be for the family and the individual diagnosed to achieve a higher quality of life. We also know that access to diagnosis is often dependent on income, race and ethnicity, and where one lives.  We must make sure that all people have equal access to appropriate evaluation and are accurately diagnosed.  We must realize that we live in a society where the cultural realities of a person often defines how they access help and we must make sure that our efforts are culturally sensitive and responsive. We must define areas of need for diagnosis,  and then work with the communities and individuals in that group to define the best approach to achieve higher rates of understanding of autism and diagnosis and the next steps that result in improved outcomes.