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Strategic Plan Question 5: Where Can I Turn for Services?

Respondent 3

b. What are the remaining gaps in the subject area covered by this chapter?
In my area, the "systems" that are in place to help families affected by ASD are so disjointed. They require the same child to receive multiple evaluations through each agency, in order to access services. The multiple arms of service need to be able to work together to help families, reducing the redundancy and increasing the effectiveness of treatment. In addition, the number of professionals and individuals trained to provide intervention is totally inadequate. There needs to be an effective plan nationwide to build the capacity of professionals who are trained and qualified to help children with ASD.

Respondent 4

John Best

a. What has been learned about the issues covered in this chapter in the past year?
The only place anyone should go to learn about autism is here: http://health.groups.yahoo.com/group/Autism-Mercury/ This link exits the Interagency Autism Coordinating Committee Web site This is where Andy Cutler teaches people how to cure autism with alpa-lipoic acid (ALA) chelation. If we cure our kids, they don't need any services you dishonest [profane language redacted].

Respondent 5

Gail Elbek
Child Health Advocates

b. What are the remaining gaps in the subject area covered by this chapter?
GAP: Stop the cause of ASD to lessen the need of services and supports. Fetal, infant, and child exposure to soy phytotoxic endocrine disruptors (ED) as repeatedly scientifically proven to cause autism and multiple neurological (and physical) disorders must no longer be IACC ignored. It is urgently important to allow the proven soy-causation of developmental mental illness as public information until proven otherwise. The U.S. Food and Drug Administration has never approved soy ED formulas or foods (or soy consumption during pregnancy) as developmentally safe or nutritional...because this is impossible.

Respondent 6

Eileen Nicole Simon
conradsimon.org This link exits the Interagency Autism Coordinating Committee Web site

a. What has been learned about the issues covered in this chapter in the past year?
The American capitalist society is based on every individual being self-sufficient, self-supporting, and a productive tax-paying citizen. America's answer to communism is private insurance. We can't really turn anywhere else for lifespan support for the disabled.

b. What are the remaining gaps in the subject area covered by this chapter?
I used to fear dying young. Now I fear becoming totally disabled and dependent on others. None of us knows if or when we might suffer a debilitating injury. We need a better system for anticipating disaster and providing long-term care. The IACC should promote enactment of a law to require mandatory long-term-care insurance for every child born. Then if lifespan care is needed, funding will be available without having to beg for legislatures to come up with allotments from tax revenues. Mandatory long-term-care insurance would also involve actuarial scientists in identifying the most important areas of research into the causes of autism. See http://conradsimon.org/Society.html This link exits the Interagency Autism Coordinating Committee Web site.

Respondent 8

a. What has been learned about the issues covered in this chapter in the past year?
This topic is so important. I would also add collaboration through agencies, and organizations is also very important, many adolescents, teens, and adults are in cross-system care, (i.e., the Office of Mental Retardation and Developmental Disabilities (OMRDD), the Office of Mental Health (OMH), state corrections offices).

Respondent 10

Andrea Payne

b. What are the remaining gaps in the subject area covered by this chapter?
I believe that the steps this committee and plan is taking are going to go a long way to meet the needs in this area. I hope that all the research studies and cross-specialty data taking is as effective as it sounds.

Respondent 13

Rebecca Kotter

b. What are the remaining gaps in the subject area covered by this chapter?
We have heard of many interventions that we would love to try with our child, but have found that the cost is ridiculously high. For instance, relationship development intervention was fantastic for our child, but costs thousands of dollars out-of-pocket for families. We paid for a Board Certified Behavior Analyst (BCBA) for several years at a cost of $145 per hour. Our son has severe apraxia, and we hoped our speech-language pathologist would attend Prompts for Restructuring Oral Muscular Phonetic Targets (PROMPT) training to learn how to work with him, but the training costs $10,000. Through our state we can receive free therapy which consists entirely of self-help type training such as fastening buttons and saying "hi" to peers. These therapies do nothing to address the underlying condition. Find out what actually works for our children, and then help us find a way to provide the therapy ourselves. Families should be the therapists since we are the people who care the most, have the most to gain from our child's improvements, and who are with the child the most hours.

Respondent 14

Kim

a. What has been learned about the issues covered in this chapter in the past year?
No doubt there must be a SEPARATION of services based on severity of autism. A high-functioning autistic person who drives himself to school and has a 4.0 grade point average, or who plays Chopin on Oprah, doesn't need the kind of services an autistic person wearing diapers at age 40 and needs 2 to 1 supervision for self-injury, needs.

Respondent 16

Family Voices-NJ

a. What has been learned about the issues covered in this chapter in the past year?
We reviewed the Autism Speaks 100 Day Kit found in English/Spanish at www.autismspeaks.org/community/family_services/100_day_kit.php This link exits the Interagency Autism Coordinating Committee Web site and we would recommend a summarized version of this tool.

b. What are the remaining gaps in the subject area covered by this chapter?
1.) We agree that behavioral interventions must be researched but again the focus must be on positive behavioral supports and interventions. We agree that children with autism have more difficulty in accessing healthcare, even for something as simple as basic dentistry. We agree that insurers and schools need assistance creating organizational structures and financial incentives so that high-quality interventions are institutionalized. Our hope is that both mental health parity and healthcare reform will facilitate this. However, in education, we caution that this must be done in an inclusive manner such as capacity building grants to include students in public schools, not to build additional segregated settings. Another challenge is funding based on geographical location and we agree there needs to be consistency. We strongly support families as partners in research because research indicates that parental involvement results in better academic and health outcomes. 2.) For short-term objectives, we agree with studying how access to services affects families, not just the child, and particularly underserved families such as immigrant families, families speaking languages other than English, African-American families, and other families of color. 3.) Under long-term objectives, we strongly support increasing skill levels in service providers, including direct support workers, parents and legal guardians, education staff, and public service workers, and urge that families be required co-presenters of training for providers.

Respondent 18

Holly Masclans

b. What are the remaining gaps in the subject area covered by this chapter?
We need a voucher system for special education and especially children with autism. The children are being lumped together with every other disability and their needs are not being met. Unless your child's parent is an attorney you can forget about getting needed services from even wealthy school districts.

Respondent 22

Aimee Doyle

a. What has been learned about the issues covered in this chapter in the past year?
What I have learned is that although there are lots of services in theory, in practice they are extremely limited. Most insurance companies do not pay for autism treatments; the ones that do pay only for applied behavior analysis (ABA), and institute a cap that might cover one year of therapy. We did ABA with our son for the full five-year program and went six figures into debt. This was back when no one paid for autism therapy. Government services are dependent on government funding, which is in short supply these days. I've also learned that respite is almost nonexistent (and respite is critical for families to cope). We qualified for the autism waiver several years back, and we have been on the waiting list ever since. Our son will age out of it before we get any services -- I believe we're somewhere around number 1,000 on the waiting list now.

b. What are the remaining gaps in the subject area covered by this chapter?
I don't know that we need improved strategies so much as we need additional funding. There seems to be a lot more enthusiasm for funding research than there is for funding services for autistic kids and adults and their families.

Respondent 23

Age of Autism

a. What has been learned about the issues covered in this chapter in the past year?
[personally identifiable information redacted]

Respondent 25

Maria Durci

b. What are the remaining gaps in the subject area covered by this chapter?
Improve awareness and understanding in the general public to improve the acceptance and integration of persons with autism in their communities.

Respondent 26

b. What are the remaining gaps in the subject area covered by this chapter?
I would add that all those with an ASD diagnosis be allowed the option to access services if needed. Where I live, those with an Asperger's/Pervasive Developmental Disorder, Not Otherwise Specified (PDD-NOS) diagnosis are ineligible for all services except the Department of Vocational Rehabilitation. This agency is not equipped to serve our kids and has short-term followup. They do not understand this population. I would also like everyone to be better educated about Asperger's. The perception that a normal IQ is all a person needs to function well is terribly wrong. Oftentimes, it is the hidden disabilities that can be more challenging for an individual because it is perceived they do not need support or help.

Respondent 27

a. What has been learned about the issues covered in this chapter in the past year?
the need of further support

b. What are the remaining gaps in the subject area covered by this chapter?
1.) Comparison of the educational/other methodologies in the learning of autistic children, such as Treatment and Education of Autistic and Communication related handicapped Children (TEACCH), Developmental, Individual-Difference, Relationship-Based model (DIR/Floortime), modern applied behavior analysis (ABA) etc. Analysis of the best educational tools to support the strengths and to help with the weaknesses of autistic people; 2.) requirements of the inclusion in mainstreamed schools to be successful. Status of training of teachers and parents to face the challenges. Role of the stereotypes about autism in the success of the inclusion (in the case of other parents, the other children, school authorities). The impact, effects and problems of bullying, stress, anxiety, hyperactivity and depression in autism at psychological and physical level and the current treatment of; 3.) studies of successful inclusion in several jobs of autistic adults. Importance of the environment and capacitation/information about ASD and the individual attitudes in the final situation. The practical aspects of accommodation of and negotiation from autistic people and from employers. Role/adequacy of a mentoring system.

Respondent 28

J. Fenech

a. What has been learned about the issues covered in this chapter in the past year?
Most discussion only involves children. What happens when they "graduate" into the system? My daughter is 17. What do you have in mind for her and all the children like her? Haven't seen any "evidence" of support for any adults with what you call autism.

b. What are the remaining gaps in the subject area covered by this chapter?
A plan of action for those who will shortly be graduating out of the system. Job training, living arrangements, etc.

Respondent 29

Pamela Greenberg
Association for Behavioral Health and Wellness

b. What are the remaining gaps in the subject area covered by this chapter?
The Association for Behavioral Health and Wellness (ABHW), an association of the nation's leading behavioral health and wellness companies that provide an array of services related to mental health, substance use, employee assistance, disease management, and other health and wellness programs to over 147 million people in both the public and private sectors, recommends adding an objective that calls for the identification of appropriate provider training and qualifications (especially related to applied behavior analysis (ABA)). There is very limited standardization with regard to who actually provides services. If research of interventions is to be valid, there needs to be greater uniformity in training and credentialing providers.

Respondent 31

American Psychological Association

b. What are the remaining gaps in the subject area covered by this chapter?
The lack of qualified providers is compounded by the lag time in translating research into practice, which compromises the quality and availability of services for individuals with ASDs. We were pleased to see that the goals include research into the best methods of training people to work with individuals on the autism spectrum, because many families complain about the lack of well trained people (emergency medical technicians (EMTs)) and police, as well as psychologists and other clinicians). Research is needed to determine the training and qualifications necessary to deliver effective interventions for ASD, and there needs to be additional emphasis on the evaluation of dissemination and training initiatives. Research needs to identify the most effective and efficient means to recruit and retain professionals who can deliver empirically supported practices in a family-/individual-centered manner. One objective includes the development of "strategies to educate people with ASDs and families about the best ways to obtain appropriate services and supports," yet many individuals and families lack access to high quality, research-supported interventions regardless of how well informed they are. Particularly for rural and underserved populations, information and decision-making skills are less useful when communities lack qualified providers. Indeed, few evidence-based treatment options are available in many areas of the country, especially in rural areas without access to university-affiliated treatment and research clinics. The Strategic Plan outlines objectives related to improving the quality of life for adults with ASD and transitional services. This is extremely important, as the majority of children with ASD develop into adults with ASD; individuals do not typically outgrow the condition. However, one of the fastest growing segments of the ASD population is comprised of people without cognitive limitations people who, based on their assessed cognitive abilities, should be able to succeed academically and in their careers. It is therefore suggested that greater attention be given to ways that we can support adolescents with high-functioning forms of ASD who have aspirations for higher education to ensure that they succeed in college and in their vocations of choice.

Respondent 35

Marc Rosen

b. What are the remaining gaps in the subject area covered by this chapter?
Excessive reliance on labels, strong propensity for states and school districts to warehouse.

Respondent 38

Audrey Smerbeck

b. What are the remaining gaps in the subject area covered by this chapter?
Why do parents seek dangerous and/or unproven biomedical interventions? What can other service providers (e.g., teacher, pediatrician) do to aid the parent in improving decision-making?

Respondent 39

Ann-Mari Pierotti
American Speech-Language-Hearing Association

b. What are the remaining gaps in the subject area covered by this chapter?
We appreciate the inclusion of the following new objective pertaining to personnel training and development. New Objective A Evaluate new and existing pre-service and in-service training to increase skill levels in service providers, including direct support workers, parents and legal guardians, education staff, and public service workers to benefit the spectrum of people with ASD and promote interdisciplinary practice by 2015. IACC recommended budget: $8,000,000 over five years. There is a need for research in the area of surveillance of qualified professionals providing services to determine the background, training, and credentials of individuals providing treatment to those with ASD and to determine the nature of the services that are currently being provided. What services are being delivered and by whom? There is a need for research that investigates the common practices in screening, assessment, and treatment and how those practices are affected by state and local interpretation of federal guidelines. Intervention research is not yet available to predict which specific intervention approaches or strategies work best with which individuals with ASD. No one approach is equally effective for all individuals with ASD, and not all individuals in outcome studies have benefited to the same degree. Larger group-design treatment studies are needed to identify characteristics of individuals with ASD that predict response to treatment. For clinicians to determine whether an individual is benefiting from a particular treatment program or strategy, measurement of that individual's progress using systematic methods, such as in single-subject research design, is also recommended. It also will be important to support the development of sensitive outcome measures that can be used for both single-subject and larger group designs. Research should be prioritized that characterizes current ASD diagnostic and service utilization patterns in community settings, examine the relationship between the likelihood of diagnosis and the services available for individuals with ASD, and that also evaluates the effectiveness of these services and intervention outcomes. The development of outcome measures and means of monitoring progress longitudinally should also be considered a high priority. ASHA believes that these priorities are necessary to accomplish in order to address the goal of determining the efficacy and effectiveness of various approaches to treatment and are therefore foundational to other research initiatives.

Respondent 42

Peter Bell
Autism Speaks

b. What are the remaining gaps in the subject area covered by this chapter?
We have been reminded in the past year of the dearth of services for individuals with autism. Services of all kinds are lacking. Individuals with autism frequently face challenges in obtaining behavioral and physical healthcare, housing, employment, as well as community integration. As the 2010 Strategic Plan for Autism Spectrum Disorder Research acknowledges, community needs far outpace the state of research. Access to healthcare is a special concern for individuals with autism and their families. Research shows that parents of children with ASD report less access to, and more dissatisfaction with, school and community health services than parents of other children with special healthcare needs (Montes, Halterman, & Magyar, 2009). Families of privately insured children with autism face greater burdens than other families in caring for their children. They have higher out-of-pocket costs, diminished work hours and lost income, and more negative health plan experiences (Busch, & Barry, 2009). More than a decade has passed since the Surgeon General concluded that 30 years of research "demonstrated the efficacy of applied behavioral methods in reducing inappropriate behavior and in increasing communication, learning, and appropriate social behavior" (U.S. Department of Health and Human Services, 1999). The demand by families and individuals with autism for better insurance coverage continues to grow. In 2010 seven states: "Iowa, Kansas, Kentucky, Maine, Missouri, New Hampshire and Vermont" have enacted insurance reform measures, requiring coverage of behavioral treatments and other autism interventions. Since 2001 22 states have enacted autism insurance bills, while at least 20 other states consider reforming their laws. Broad state and federal mental health parity laws complement the protections afforded by state autism insurance statutes. The Patient Protection and Affordable Care Act of 2010 recognizes the urgent need for covering behavioral treatments for autism by including "mental health and substance use disorder services, including behavioral health treatment" in the essential health benefits package. The flurry of legislative activity concerning autism and healthcare is not reflected in the Strategic Plan. Question 5 of the Strategic Plan asks, "Where can I turn for services?" but answers the question only generally. Following the discussion is an aspirational goal: "communities will access and implement necessary high-quality evidence based services and supports that maximize quality of life and health across the lifespan for all people with ASD." This laudable goal would be advanced by additional research into the delivery of healthcare to individuals on the spectrum. In the entire Strategic Plan, insurance is mentioned but twice, both times under Question 6, "What does the future hold, particularly for adults?" Under the discussion of what we know about that topic, the Strategic Plan observes that "[f]amilies often report incurring large debts related to medical and educational services not covered through public programs or medical and dental insurance." The discussion then moves on to other subjects, failing to consider the consequences of the burdens placed on families and affected individuals. Under the short-term objectives listed for the chapter, the Strategic Plan lists "Develop one method to identify adults across the ASD spectrum who may not be diagnosed, or are misdiagnosed, to support service linkage, better understand prevalence, track outcomes, with consideration of ethical issues (insurance, employment, stigma) by 2015." Insurance issues facing individuals with autism of all ages warrant far more urgent scrutiny. We recommend research to better understand the consequences of underinsurance, including the failure of most insurers to provide comprehensive behavioral healthcare to individuals with autism at all ages. We also need research about the benefits, financial, health outcomes, and otherwise, of providing strong cradle-to-grave care. We do know that autism has a major economic impact (Ganz, 2007). What is needed is comprehensive research examining the impact of having access to good physical and behavioral healthcare for improving the outcomes of individuals with ASD, including their ability to live rich, full, and productive lives. The discussion under Question 6 ("Which treatments and interventions will help?") acknowledges that "[a] wide range of treatment and intervention options are available for children and adults with autism that can target core symptoms, ameliorate associated symptoms, and prevent further disability." Until the effectiveness of those treatments is more broadly understood and accepted, however, individuals with autism will continue to suffer from substandard healthcare. Autism Speaks urges the Interagency Autism Coordinating Committee (IACC) to convene a workshop or conference on coverage of health services for individuals with autism. The forum should gather information on marketplace coverage for individuals and groups under fully funded and self-funded private plans, as well as coverage under government plans, including Medicaid, the military health system, and the Federal Employees Health Benefits Program, identify gaps in care, and consider how those gaps could be closed. The IACC should report its findings and make recommendations to Congress. As states and the federal government focus on healthcare issues, the autism community looks towards the IACC for leadership consistent with its core values of urgency, excellence, and consumer focus. Additionally, the number of service providers has not kept pace with the increase demand for services in autism. This is especially true in rural areas where services can be extremely scarce. Ethnic minority populations may not have access to appropriate treatments due to language and cultural barriers. As we continue to develop effective interventions, it is crucial that we conduct health services research focused on identifying the most effective intervention training programs for both professionals and families. Research is needed to develop effective training models that are accessible to clinicians and families in both un-served and underserved parts of the country through a variety of delivery options (web-based, in-person, video conferencing). Research on training programs that can help provide continuity of care and empower families so that they are able to effectively address the wide range of challenges faced by individuals with ASD at each stage of life is especially needed. References Busch, S.H., & Barry, C.L. (2009). Does private insurance adequately protect families of children with mental health disorders? Pediatrics, 124: S399-406). Ganz, M.L. (2007). The lifetime distribution of the incremental societal costs of autism. Archives of Pediatrics & Adolescent Medicine, 161(4), 343-349) Montes, G., Halterman, J.S., & Magyar, C.I. (2009). Access to and satisfaction with school and community health services for US children with ASD. Pediatrics, 124, S407-413). U.S. Department of Health and Human Services. (1999). Mental Health: A Report of the Surgeon General, 163-164.

Respondent 44

Linda A. Fravel
Autism Insurance in Michigan

a. What has been learned about the issues covered in this chapter in the past year?
Unfortunately, I believe this body is missing the most fundamental issue of all. What use are the millions of dollars spent if families cannot afford the services that even now are indeed available??? In all but 24 states, insurance companies discriminate against children with autism! How can this be? How can this be allowed? It is a national shame! Every effort should be put forth this year to outlaw discrimination against our nation's children by insurance companies. This is a treatable, mental/physical issue--just as real as diabetes or drug dependency. PUT EFFORT HERE! Every statistic available shows that the cost to treat our children raises premiums less than one percent, if that. Other statistics show that dollars spent on early treatment saves millions of dollars over the lifetime of the affected person.

Respondent 45

b. What are the remaining gaps in the subject area covered by this chapter?
The IACC should engage the legislature with information regarding the expense of therapies, treatment and day-to-day care of autistic individuals and the terrible toll it takes on productivity, society, families, commerce and revenue.

Respondent 47

Duke Crestfield

a. What has been learned about the issues covered in this chapter in the past year?
People with ASD are not 'just like everybody else' when it comes to getting good care. Issues like atypical pain response, social processing differences, and literalism interfere with adequate healthcare. The healthcare providers know almost nothing about ASD and therefore can't incorporate it into their diagnostic and communication protocols.

b. What are the remaining gaps in the subject area covered by this chapter?
Adoption of the classification and regression tree (CART) model for comprehensive care, where appropriate.

Respondent 49

Christina Nicolaidis, MD, MPH

b. What are the remaining gaps in the subject area covered by this chapter?
I am very pleased to see the addition of the new objectives addressing services for people across the lifespan. As a healthcare provider, I regularly struggle with how to provide appropriate services to individuals on the autistic spectrum. I am assuming that the committee is including health in the concept of "quality of life" and is including healthcare services in the concept of "services". However, the objectives, as currently worded, may be misinterpreted to focus more on social issues and social services than on health or healthcare. For example, the list of service providers included in the new Long-Term Objective C does not include healthcare providers. I would suggest adding in more specific language to ensure that the new goals address issues of health and healthcare. For example the proposed new objectives could be modified as follows (additional words in ALL CAPS): Evaluate new and existing pre-service and in-service training to increase skill levels in service providers, including direct support workers, parents and legal guardians, education staff, HEALTHCARE PROVIDERS, and public service workers to benefit the spectrum of people with ASD and promote interdisciplinary practice by 2015. IACC recommended budget: $8,000,000 over five years.

Respondent 50

Theresa K. Wrangham

b. What are the remaining gaps in the subject area covered by this chapter?
Development of a coordinated, integrated, and comprehensive community-based service delivery system for people with ASD. This is not a research opportunity and should be deleted from the plan or reworked into an actual research opportunity.

Respondent 52

a. What has been learned about the issues covered in this chapter in the past year?
In these very complicated times, large systems can make an increased effort to simplify the explanation, etc. of the process. For example, use visuals -- with emphasis on sequence, timing and information. Flow charts are good --

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Please note that respondent numbers are not sequential due to the fact that some respondents did not provide an answer to each question or sub-question. Some respondents indicated that they wished to have their name and/or affiliation be associated with their response, and in those cases, the information is provided at the top of the response.

Typographical and spelling errors have been corrected and abbreviations lengthened to facilitate searching the document. Every effort was made to avoid altering the meaning of the comments. Responses that referenced an individual respondent's earlier responses (e.g. "See above.") and did not contain additional information were omitted to make this working document more concise. Profane, abusive and/or threatening language, and personally identifiable information have been redacted.

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