transitional an d adult ser vice s - homepage | outreach · regional networks/system support. anna...

Tra

AL

ansit

Ce

AutisLinkition

rtified 2015 C

sm ing tal an

Public CPM So

n Althe nd A

Managolution

labaPiecAdult

ger® Prns Alaba

amaces: t Ser

rogramama

rvice

m

es

TableofContentsAutism in Alabama Project Team 3

Acknowledgements 4

Introduction 5

History of Autism 5

Autism Statistics 7

School Years 8

Life After High School 10

Existing Resources 11

Recommendations 12

Conclusion 17

Works Cited 18

Appendix A: Helpful Online Resources 19

Appendix B: Transitional and Adult Services Resource Guide Template 20

Autism in Alabama P a g e | 3

Autism in Alabama Project Team Alabama Department of Economic and Community Affairs

Heather Goggin, [email protected]

Alabama Department of Education Angela Abernathy, [email protected]

Alabama Department of Insurance

Yada Horace, [email protected]

Alabama Department of Mental Health/Department of Rehabilitation Services Karen Coffey, [email protected]

Alabama Department of Revenue

Bill Hall, [email protected] Phillip Kidd, [email protected] Changlan Li, [email protected] Jerry Willis, [email protected]

Alabama Department of Tourism

Trisa Collier, [email protected]

Alabama Real Estate Commission Codey Cherry, [email protected]

Retirement Systems of Alabama

Penny Wilson, penny.wilson@rsa‐al.gov

Autism in Alabama

Acknowledgements The CPM Solutions Alabama Autism in Alabama Project Team would like to thank Anna McConnell, State Autism Coordinator, for her assistance in this project. We would also like to acknowledge the following for their information, guidance and support they contributed to the success of this project:

Members of the Alabama Interagency Autism Coordinating Council

Ally Brooks, Kentucky Advisory Council on Autism Spectrum Disorders and Kentucky Autism Training Center Advisory Board, and Jerry Brooks, Autism Parents of Jasper and Ella

Ciara Buxton, Autism Parent of Izzy

Susan Goldthwaite, Education Specialist, Alabama Department of Education

Dr. Caroline Gomez, Board of Directors, Autism Society of Alabama

Maria Gutierrez, Vice‐President, Lee County Autism Resource & Advocacy

Joshua Heard, Student, Auburn University at Montgomery

Angela and Stacey Kent, Autism Parents of Hildan

Tamara Massey‐Garrett, Director, Auburn University at Montgomery Center for Disability Services

Pat Morrow, Director, Project Key, Faulkner University

Ricki and Derek Oliver, Autism Parents of Hayden

Jane Rudick, Disability Services Coordinator, Troy University

Tina Sanders, Education Specialist, Alabama Department of Education

Courtney Tarver, Associate Commissioner, Alabama Department of Mental Health

Karen Vinson, Board of Directors, Autism Society of Alabama

Jennifer and Dave Whitney, Autism Parents of Hayden

Autism in Alabama

Introduction Autism Spectrum Disorder (ASD), or autism, is a neurodevelopmental disorder that can cause significant social, communication and behavioral challenges. According to the National Institute of Child Health and Human Development, autism affects how a person behaves, interacts with others, communicates and learns.1 There is no known cause, and no cure – autism is a lifelong developmental disorder. Based on 2013 data from the Alabama State Department of Education, approximately 1 out of every 126 students enrolled in Alabama public schools has been diagnosed with ASD. In 2009, the Riley Ward Alabama Autism Support Act (Act 2009‐295) was signed into law by Governor Bob Riley, establishing the Alabama Interagency Autism Coordinating Council (AIACC). Composed of 13 state agencies, eight organizational stakeholders, and seven individuals representing those with autism, the Council is "charged with meeting the urgent and substantial need to develop and implement a statewide, comprehensive, coordinated, multidisciplinary, interagency system of care (SOC) for individuals with Autism Spectrum Disorder (ASD) and their families."2 As part of their efforts, the Council developed and published their 2014 Strategic Plan, which includes goals in five distinct areas:

Accountability Public Awareness Funding Accessibility Regional Networks/System Support.

Anna McConnell, State Autism Coordinator, met with the Autism in Alabama Project Team and presented several topics and initiatives where she felt the team’s research could be. Through extensive initial research, the team learned first‐hand just how complex ASD is. While increased services are needed for people of every age with autism, there is a significant decrease in availability and accessibility once high school ends. Because of this deficiency in the service continuum, the Autism Team chose to focus on recommendations related to transitional and adult services.

History of Autism Psychiatrist Eugen Bleuler first used the term “autism” in 1908 to describe a schizophrenic patient who had withdrawn into his own world. Bleuler used the word “autism” to mean morbid self‐admiration and withdrawal within self.

1 Autism Spectrum Disorder (ASD): Condition Information. National Institute of Child Health and Human Development 2 AIACC 2014 Strategic Plan

Autism in Alabama

There were no significant revelations about or related to autism for the next 35 years. In the early 1940s two men working separately, Hans Asperger and Leo Kanner became the foremost pioneers in autism research. Asperger’s 1944 work described very able children with a milder form of autism, eventually categorized as Asperger’s Syndrome. Dr. Leo Kanner began his examination of 11 severely affected children in 1938 with a five year old male patient identified as “Case 1‐ Donald T.” The study of these 11 children resulted in an article entitled Autistic Disturbances of Affective Contact published in the 1943 journal Nervous Child3. The historical significance of Dr. Kanner’s paper is remarkable as he defined “a distinct syndrome” instead of previous depictions of various other mental illnesses. Just 72 years ago, “Donald T.” became the first person to ever be diagnosed with the specific condition called autism. The next significant point in autism’s history did not occur until 1980, when the diagnosis of “infantile autism” was added to the Diagnostic and Statistical Manual of Mental Disorders (DSM). For the first time, autism was recognized as a completely independent diagnosis not related to childhood schizophrenia. This diagnosis was defined by six mandatory and severe criteria, making it a narrow diagnosis. Seven years later, a revision to the DSM‐III replaced “infantile autism” with “autism disorder,” including a broader definition and diagnostic criteria. This was also the year that Dr. Ivar Lovaas published a study describing success in using intensive behavioral therapy with children with autism – the precursor to today’s Applied Behavior Analysis Therapy. In 1990 – only 25 years ago – Congress renamed the Education for All Handicapped Children Act the Individuals with Disabilities Education Act, or IDEA. For the first time, autism was recognized and included as an eligible disability. The next year, the federal government designated autism as a special education category, and public schools began identifying children on the spectrum and providing special services. The first reporting of autism by public schools didn’t begin until 1992. The DSM‐IV, published in 1994, included Asperger’s Syndrome as a diagnosis for milder cases of autism. Individuals with Asperger’s Syndrome tend to be more highly functioning; six years later, the majority of children with ASD had an IQ in the non‐retarded range.4 The DSM‐V, published in 2013, shifted all subcategories related to autism into a single umbrella diagnosis of Autism Spectrum Disorder.

3 Kanner, Leo. Autistic Disturbances Of Affective Contact. 4 Coplan, James. Making Sense of Autistic Spectrum Disorders.

Autism in Alabama

Autism Statistics There have been significant strides in defining the condition and identifying individuals with ASD since Dr. Kanner’s first study of autism. However, many of those strides have come in a short timeframe – essentially all modern diagnostic information has occurred in the last 35 years, with the most drastic changes in diagnosis and reporting coming within the last 25 years. Since reporting on ASD began in 1992, studies have shown a constant rise in the estimated number of children diagnosed with ASD, from 1 in 150 in 2000 to 1 in 68 in 2014. According to Dr. James Coplan, discussions about ASD statistics focus on children because “no one in this country has actually looked to see how many adults with mild ASD are really out there.”5 In Making Sense of Autistic Spectrum Disorders, Dr. Coplan further explains that the educational system primarily compiles data on children, but “no governmental agency collects any meaningful information about the developmental status of adults” with ASD. The topic of prevalence is hotly debated as many question the actual reason for the increased estimates. Explanations range from increased awareness and expanded diagnostics to environmental factors or a combination of genetic and environmental factors. Many noted scholars attribute the increase to a combination of all of the previously mentioned reasons. Ms. McConnell warned the team that finding solid data regarding the number of people, at any age, diagnosed with ASD was a nearly impossible task, and she was correct. The Centers for Disease Control and Prevention (CDC) report an average of 1 in 68 children are diagnosed with ASD in the United States. The report is based on a study covering 363,749 eight (8) year old children, representing only 9% of eight‐year‐olds in the United States in 2010.6

5 Coplan, James. Making Sense of Autistic Spectrum Disorders. 6 Baio, Jon. Prevalence of Autism Spectrum Disorder Among Children Aged 8 Years — Autism and Developmental Disabilities Monitoring Network

Autism in Alabama

According to this study, in 2010, 1 in 175 eight‐year‐old Alabamians were diagnosed with ASD. Examination of the data from Alabama further illustrates the relatively small number of areas represented in the study. There are 67 counties in the state of Alabama, and data was obtained from only nine counties from the northeast and central part of the state in the cited surveillance. Information from the Alabama State Board of Education shows in 2013 that 5,917 students, or 1 in 126, in Alabama were receiving special education services as a result of an ASD diagnosis. As awareness regarding autism has grown, efforts have been made to improve the services and outcomes for individuals with ASD, including in Alabama. Most of these efforts are relatively recent, given the current increase in autism awareness, and there is still room for growth and improvement. However, based on the Autism Spectrum Disorders (ASD): State of the States of Services and Support for People with ASD, developed for the Centers for Medicare & Medicaid Services (CMS), these efforts are producing results today and will further develop in the years to come.

School Years Every child with a disability has a right to an appropriate education. There are several federal laws that protect students on the autism spectrum through Individualized Education Plans (IEP) tailored to the specific needs of the children based on their level of learning. An IEP is the process put in place under the Individuals with Disabilities Education Act (IDEA) to determine the programs and services that should be provided to meet the education needs of a child with disabilities. An IEP must be developed to address a child’s specific and unique needs and is not a “one size fits all” program. These laws are a critical underpinning for our public schools, but more can be done to improve educational opportunities for students with autism.

Autism in Alabama

For babies and toddlers with any developmental delay, early intervention can significantly improve the long‐term outcomes, and autism is no exception. A diagnosis at age two is considered valid, although diagnosis is becoming possible as early as 18 months. Once a diagnosis is received, early intervention services are available up to age three, and can include assistive technology, speech and language services, counseling and training for a family, occupational therapy, physical therapy, psychological services or others. Unfortunately, a majority of children with autism don’t receive a diagnosis until after age four, meaning they miss out on these valuable services. After a child turns three, they are no longer eligible for early intervention services. Instead, the local school district begins to provide special education services. An IEP that describes strengths and weaknesses as well as goals and objectives and how those can be met becomes the guide for providing an education. For a child receiving early intervention services, the transition to preschool special education services begins at 30 months and includes follow‐up after the child begins preschool. This way, the child is fully prepared and all of the pieces are in place for them to continue into the K‐12 public education system. Public schools are legally bound to use an IEP to guide the education of a child with an ASD. It outlines therapies and educational programs that will be provided to help ensure a child's educational success. Therapies might include speech therapy, occupational therapy, physical therapy and behavioral therapy. The IEP might also define the time a child will spend with a special education teacher. Public schools are doing all they can but are struggling to keep up with the growing number of students with autism. Kids with high‐functioning autism are usually folded into local public schools, but it’s not easy for these institutions to cope with many of the children’s unique needs. Some children with autism exhibit strong sensitivities to sounds, lights and crowds; for example, the school bells hurt their ears, and crowded hallways are overwhelming. Others struggle with abstract language, and for them communicating effectively with teachers is a challenge. Making friends and blending in socially is an even greater struggle for these students. In general, students who deviate from the standardized norms experience trouble having all their needs met in public school settings; those difficulties are perhaps the hardest for children with autism. Transition planning must begin no later than the first IEP after a child turns 16, and must include the student’s participation. IDEA defines transition services as a “coordinated set of activities…that is designed to be within a results‐oriented process, that is focused on improving the academic and functional achievement of the child with a disability to facilitate the child’s movement from school to post‐school activities, including postsecondary education, vocational education, integrated employment (including supported employment), continuing and adult education, adult services, independent living or community participation.”7 Transition services are to be designed “based on the individual strengths, preferences, interests and needs of the

7 Code of Federal Regulations. 34 CFR 300.43(a)(1)

Autism in Alabama

student and should include instruction, related services, community experiences, the development of employment and other adult living objectives and acquisition of daily living skills and a provision of a functional vocational evaluation.”8 Once transition services begin, every IEP thereafter must include “appropriate measurable postsecondary goals based upon age appropriate transition assessments related to training, education, employment and, where appropriate, independent living skills; and the transition services needed to assist the child in reaching those goals.”9

Life After High School As these individuals prepare to leave high school, they are faced with the many of the same decisions as their non‐disabled peers. However, for those with autism, an important difference is the loss of the comprehensive, guaranteed assistance that has helped them successfully navigate thus far. While transition planning as part of the IEP will help with some of these changes, there are often gaps in knowledge of what services are available after high school, as well as how to access them. A 2012 study published in the Pediatrics journal estimates that 50,000 individuals with ASD turn 18 annually. The study also indicates that while approximately 35% of youth with ASD attended college, and 55% held employment within the first six years after high school, less than half of those who left high school in the past two years had any participation in education or employment. 10 Because autism is a spectrum with a variety of symptoms and severities, higher functioning ASD individuals can thrive in the traditional post‐secondary and employment environments with proper assistance. For students attending college, the schools’ Offices of Disability Services can provide a great deal of support; but, for the first time in this person’s life, they are responsible for seeking out and accessing these services, which proves to be a barrier for many young adults with autism. Without those services, it becomes less likely that they will successfully integrate into a collegiate setting, decreasing their chances of success. Dr. Peter Gerhardt, an expert working with adults who have autism, states the situation very plainly: “People want to treat these adults like little kids in big bodies. They can’t. They’re adults.” Gerhardt explains that adults with autism are like any other adults in that they want to experience life. “It’s having friends,” Gerhardt explains. “It’s having interesting work. It’s having something you want. It’s all the things the rest of us value, once given an opportunity.”11 However, for those with autism, realizing those goals requires an extra effort, and understanding the resources available can be a deciding factor in achieving success. Providing stronger, more widely available services to support people with ASD through their transitional years and through adulthood will broaden the opportunity for those individuals to succeed as happy, engaged, contributing members of society.

8 Code of Federal Regulations. 34 CFR 300.43(a)(2) 9 Code of Federal Regulations. 34 CFR 300.320 (b) 10 Shattuck, et al. Postsecondary Education and Employment Among Youth With an Autism Spectrum Disorder. 11 Donovan, John, and Caren Zucker. 'Autism's First Child'.

Autism in Alabama

Existing Resources For those entering the work force, the Alabama Department of Rehabilitation Services offers skills as well as job assessments. There are programs in Alabama such as “Connections”, YAIT and KINEX that teach job skills necessary to enter and remain in the work force. It is certainly more beneficial if this training is started while still in the education system. Autism Speaks, in collaboration with Rangam Consultants Inc., announced the launch of TheSpectrumCareers.com, a new jobs portal designed to promote inclusive employment of the autism community by matching job seekers with businesses, as well as employment service providers. In addition to employment some programs offer residential living accommodations. Examples are “Roses for Autism” Pinchbeck Farm in Guilford, CT, Triform in Hudson, NY and Erik’s Ranches and Retreats in Edina, MN and Buford MT. These farms and ranches provide practical on‐the‐job training in a structured environment. There are even websites listing the various types of group homes and residential supports. Glenwood, the Autism & Behavioral Health Center of Alabama, is among those listed. Many ASD students will choose to pursue postsecondary education. Early comprehensive planning during grades 10‐12 is necessary to successfully transition. After enrollment parental involvement is very limited and self‐advocacy skills are vital. All educational institutions have disability services offices or their equivalent which aid students in attaining necessary services and accommodations. However, it is up to the student to make contact hopefully before enrollment and on a continual basis. Some universities offer ASD specific courses and life skills training. According to bestcollegesonline.com the University of Alabama is listed as one of the top autism friendly universities. Another important element to be considered is funding. In addition to academic scholarships, there are several autism specific awards that in some cases is not school dependent. Examples are Austim Speaks scholarships, Schwallie Family Scholarship Program (University of Alabama) and Lisa Higgins Hussman Scholarship. Not all of those leaving the education system will pursue either employment or postsecondary education opportunities. Individuals with more severe ASD may be focused on their residential and independent living needs. Group homes are an option, as well as in‐home care providers; in very limited situations Medicaid waivers may be available for assistance. Waivers are vehicles states can use to test new or existing ways to deliver and pay for healthcare services in Medicaid and the Children’s Health Insurance Program (CHIP). There are four categories of Medicaid waivers. However, the type of waiver that can potentially provide a benefit to those with ASD are the Section 1915(c) Home and Community Based Service Waivers. Currently there are 33 states with Medicaid 1915 c) ASD specific waivers. Approximately 14 of those states have waivers that cover ASD related services only. The other 19 states with an ASD waiver specifically list autism as a cover diagnosis along with the umbrella of disabilities that fall under intellectual disabilities (DO) and/or developmental disabilities (DD). A study was conducted by Virginia Commonwealth University between 2009 – 2012 involving Project SEARCH that showed 87% of the students in the group gained competitive employment in jobs not traditionally considered for individuals with developmental disabilities as opposed to

Autism in Alabama

the control group who only had 6% competitive employment12. Based on this research findings it is vitally important for ASD students to seek employment while in high school. Job coaches or employment specialists can be provided through Vocational Rehabilitation Services. Additionally, self‐advocacy organizations and opportunities, such as Youth Advocacy in Transition, or YAiT, provide valuable knowledge and skills for children while they are still in high school.

Recommendations The Autism in Alabama Project Team researched successful programs and initiatives both in Alabama and around the country. Through this process, the team identified 14 recommendations that can help the Alabama Interagency Autism Coordinating Council achieve its goals.

1. Establish an AIACC subcommittee to develop a plan for conducting an ASD census.

One of the challenges in determining the needs for autism services in Alabama is the lack of a definitive, comprehensive assessment of the number of individuals with autism. The team recommends that the AIACC establish a subcommittee to study the Pennsylvania Autism Census 2014, conducted by the Pennsylvania Department of Public Welfare, and to develop a plan to conduct a similar study in Alabama. Once those numbers are accurately established, demonstrating the specific needs of various groups becomes easier, allowing better preparation and pursuit of resources for services including grants and federal funding.

2. Strengthen the network and cooperation of local advocacy groups.

Local programs are an integral part of the success of most advocacy efforts because they know their community and understand the best ways to work within it. Additionally, local citizens are familiar with these local organizations and are often more comfortable working with the people who are a part of them. However, each of these organizations operates independently, and there is not a structured way for them to communicate with each other and share ideas. AIACC is working towards a goal of establishing five regional centers across the state to serve Alabamians with autism, and engaging with local organizations will be an important part of that process. By facilitating some type of organized communication network, the AIACC will put the first pieces of a statewide network in place. This could take many forms, such as quarterly conference calls, annual meetings, online communication via Google Groups or other such mechanisms, or a newsletter sharing best practices and lessons learned along with updates on what various organizations are doing.

12 Schall, Carol. Project SEARCH with ASD Supports: A Randomized Clinical Trial to Explore Competitive Employment for 18 to 22 Year‐Olds with Autism Spectrum Disorders (ASD).

Autism in Alabama

3. Strengthen IEP process, including student involvement and Vocational Rehab involvement starting at age 14, and improve self‐advocacy and independent living skills.

In §§300.320(b) of the IDEA law, transition services are to begin “not later than the first IEP to be in effect when the child turns 16, or younger if determined appropriate by the IEP team,” although they may begin as early as it is deemed appropriate. IDEA recommends the inclusion of the child in the IEP process as appropriate, as the younger a child is when they become an active part of the IEP process, the more opportunity they have to see people advocating on their behalf, and to start practicing self‐advocacy. By the time the transition planning begins, they will be engaged in the process, and the service providers working with them will have had an opportunity to more fully recognize and assess their interests and skills, allowing them to more accurately help design the transition plan. One of the prescribed components of the IEP Transition Plan is the development of employment skills and a functional vocational evaluation. Currently, Vocational Rehabilitation (VR) begins involvement with students at 16, when the IEP transition planning typically begins. The team proposes that VR and the state and local Departments of Education work together to begin VR’s involvement with students at age 14, including a preliminary vocational evaluation to assess the student’s current interests and strengths. This will provide a valuable tool in shaping the IEP and allowing the IEP team to better direct the student in the right direction. Partnering with local organizations such as Glenwood Autism and Behavioral Health Center that already offer specialized services to assist with transition is another avenue for facilitating this recommendation. Additionally, assessing strengths and providing “job skills” training at that early age, even before the legal age for employment, will help prepare students to participate in Project Search or other such co‐op programs once they reach the appropriate age.

4. Expand Project Search or similar co‐op programs.

Project Search is already a successful program in Alabama with seven sites and ten projected sites. By expanding it and other similar programs, more students with ASD will have an opportunity to begin learning job skills at an early age. In addition to expanding Project Search for high school students, the team recommends the creation of a similar program targeted towards adults with ASD who would like to enter the workforce, but need a bit more guidance than is available in other situations. Inquiries to the Governor’s Committee on Employment of People with Disabilities have indicated their initial interest in developing an ASD‐specific program, and this could be an ideal place to engage that connection. A study was conducted by Virginia Commonwealth University between 2009 – 2012 involving Project SEARCH that showed 87% of the students in the group gained

Autism in Alabama

competitive employment in jobs not traditionally considered for individuals with developmental disabilities as opposed to the control group who only had 6% competitive employment. Based on this research findings it is vitally important for ASD students to seek employment while in high school. Job coaches or employment specialists can be provided through Vocational Rehabilitation Services.

5. Expand the CONNECTIONS and Youth Advocacy in Transition (YAiT) programs.

The CONNECTIONS program has been ongoing at the Lakeshore Foundation in Birmingham for the last several years, and this year, an expansion pilot was held in Opelika. The program includes both young adults with autism and other similar disorders as well as their parents and family members, who play an important role in the student’s transition. CONNECTIONS incorporates communication and interpersonal skills with decision making skills and critical soft skills, all of which are important for success outside of the K‐12 school system. By including the families, parents have a stronger understanding of how to best incorporate these methods in day‐to‐day life, increasing the student’s comfort levels and familiarity. The students have group outings and class sessions that don’t include their family members, which allows them to test their developing skills while still in a “safe” environment. It was recently announced that the program will be expanding to Montgomery this fall, with all major cities around Alabama interested in hosting a session. The Youth Advocacy in Transition (YAiT) is another program that teaches students the importance of self‐advocacy, independent living and job skills for students while in school.

6. Partner with local business associations to provide education on hiring individuals with autism for local businesses.

While helping people with autism strengthen their job interview skills is a valuable goal, many of those individuals will still struggle with successful interviews. By teaching business owners and managers about the communication difficulties that are a part of autism, it is possible to help open the door for them to see past the interview to the value the individual can bring to the job. The team recommends that the AIACC work with local groups to partner with local business associations to provide this type of education.

7. Include Developmentally Disabled in appropriate waivers and increase available slots.

Alabama is one of only 17 states that currently does not have any 1915 (c) Medicaid waiver programs specific to individuals with ASD. While Alabama does have seven waiver programs currently serving persons with disabilities, only two of them provide services to those with cognitive disabilities. Neither of these waivers includes persons with a diagnosis of developmentally disabled in their eligibility, making them available only to people with an IQ score of less than 70 prior to age 17. Based on data from the

Autism in Alabama

Centers for Disease Control, the most recent studies indicate that 69% of children diagnosed with ASD have an IQ above 70, which would exclude a majority from eligibility for either of these waivers. Even if a person did meet the requirements, there is a very long waiting list in order to access the services. Each Medicaid waiver program is approved by the Centers for Medicare and Medicaid Services (CMS) for a certain number of slots or to serve a certain number of persons. Once all waiver slots are filled on a particular waiver, a waiting or referral list is established, and persons needing services are left waiting on a vacated slot, sometimes for years, before actually receiving services. Alabama waiver programs are operated by four state agencies, all of which rely on funds appropriated by the state legislature to set the number of individual slots and to provide services. The legislature must appropriate more funds to each state agency before it can add more slots or add services to the waiver program. If an increase in funding were allocated to a state agency to increase the number of slots or services, CMS would have to approve an amendment to the waiver before changes could be implemented.

While the preferred recommendation would be the creation of a Medicaid waiver that would serve ASD adults specifically, a lack of available public funding makes it nearly impossible to start a new waiver program in Alabama at this time. In an interview with the Assistant Commissioner of the Intellectual Disabilities Division within the Alabama Department of Mental Health, Mr. Courtney Tarver, he stated that, in his opinion, it would be easier to expand the eligibility in the Intellectual Disabilities and Living at Home waiver programs to include those with developmental delays than to create a new waiver designed to serve those with ASD. Therefore, the recommendation is that “developmentally disabled” be added to the waiver definitions as an eligible diagnosis, allowing the IQ requirement to be waived as appropriate, and that the number of available slots be increased to accommodate the increased number of eligible individuals.

8. Promote the ABLE Act.

While AIACC is already planning a strong outreach to educate the public about the Achieving a Better Life Experience (ABLE) Act, the team recommends that the marketing and education plan include schools, Pre‐K programs and pediatricians’ offices, because all are in a unique position to provide parents with valuable information they might not receive elsewhere.

9. Develop and implement state‐sponsored training.

A person with autism is not the only one affected by their diagnosis. Parents and siblings are significantly impacted as well, and providing training and education to them is a key part of helping a person with autism succeed. The team recommends identifying grants or other resources that can be used to offer training similar to what is offered by the Kentucky Autism Training Center at the University of Louisville, which offers a variety of

Autism in Alabama

training opportunities for parents, families, educators and advocates in addition to self‐advocacy and other training programs for individuals with autism. More information about the KATC training can be found on their website (http://louisville.edu/education/kyautismtraining).

10. Develop a database of successful innovative programs.

If local groups within Alabama have a hard time communicating and keeping up with one another, staying on top of successful, innovative programs in other areas is nearly impossible. We recommend that AIACC establish a searchable database of innovative programs in other states, allowing local groups, or even parents, to help populate it as they come across ideas to consider down the road. To start the process, the Autism in Alabama Team has created an online document to be given to the AIACC with a few ideas already populated (https://goo.gl/GM1rcA).

11. Develop and publish a guide to transitional and adult resources.

One difficulty faced by parents and individuals with autism is knowing what resources are available and where to find them. We recommend developing and publishing a resource guide designed specifically for transitional and adult services, to be updated annually. As an addendum to our white paper, we have provided a draft template as a starting point for such a guide.

12. Utilize Pre‐Employment Transition Services funding (VR) to create new ASD‐specific

programs.

The division of Vocational Rehabilitation has received Pre‐Employment Transition Services funding that can be utilized for programs benefiting students through 12th grade. The team recommends that part of this funding be directed to create ASD‐specific programs for job skills training.

13. Ensure all ASD students have essential assessments (VR) and skills to enter postsecondary institutions.

As students enter the 10th grade and follow through to their senior year their participation in choices concerning their future increases. In addition, their strengths, weaknesses, preferences and desires change. The IEP that addressed their education needs may become less capable in meeting their needs. There are other resources available to students such as vocational rehabilitation assessments or aptitude tests. It is vital for students to get the best comprehensive assessment available so the finding can be used to make the best choices and get the additional assistance needed to be successful in graduating from their post‐secondary educational institution of their choice. Copies of these assessments should be presented to the disabilities services office at the educational institution. This documentation will serve as the basis for helping students determine what services they need. It is vitally important for the

Autism in Alabama

student to contact the Office of Disability Services or students services well in advance to ensure the coordinator has time to obtain and process all the necessary information and paper work.

14. Visit postsecondary institutions and engage with the Office of Disability Services.

Deciding which educational institution to attend can be complex and confusing. Decisions can include whether to attend a local/commuter or a nonlocal institution, to live on campus or nearby, to attend a public or private institution, to attend a large or small institution, to attend a four‐year or two‐year institution, availability of online classes, desire for small class sizes, what accommodations are available, are there other special programs which specialize in meeting ASD needs, are there ASD specific scholarships or other scholarships available, are work studies or other campus jobs available and so forth. The first step to answering these vitally important questions can be to attend college preparatory programs available through the Alabama Department of Rehabilitations Services. The next step would be to contact educational institutions and setup private tours. Good sources for choosing these institutions are through school guidance counselors, college fairs and internet searches.

Conclusion Dr. Ivar Lovaas has said, “If they can’t learn the way we teach, we teach the way they learn.” Twenty‐five years ago was the first time that children with autism were given the opportunity to access educational resources and accommodations in public schools. Those children have now grown up, and have reached an age where those support services are no longer available. They have faced the transitional cliff, and as the prevalence rates of autism continue to grow, more and more young adults are standing on that edge every day. The K‐12 programs are still growing, but now is the time to take a look at the next step. Dr. Lovaas’s words apply even after the time in a classroom has passed, because there is always more to learn. Implementing these recommendations provides a way to help those with autism continue learning and growing in a way that brings out their best and allows them to give back at the same time.

Autism in Alabama

Works Cited Baio, Jon. Prevalence of Autism Spectrum Disorder Among Children Aged 8 Years — Autism and

Developmental Disabilities Monitoring Network, 11 Sites, United States, 2010. March 28, 2014 / 63(SS02); 1‐21

Coplan, James. Making Sense of Autistic Spectrum Disorders: Create the Brightest Future for

Your Child with the Best Treatment Options. New York: Bantam, 2010. Print. Donovan, John, and Caren Zucker. 'Autism's First Child'. The Atlantic 2010. Web. 28 July 2015. Kanner, Leo. Autistic Disturbances Of Affective Contact. 1943. Web: The Embryo Project

Encyclopedia.. 28 July 2015. Autism Spectrum Disorder (ASD): Condition Information. National Institute of Child Health and

Human Development, 6 Jan. 2014. Web. Schall, Carol. Project SEARCH with ASD Supports: A Randomized Clinical Trial to Explore

Competitive Employment for 18 to 22 Year‐Olds with Autism Spectrum Disorders (ASD). Issue brief. Virginia Commonwealth University. Print.

Shattuck, P. T., S. C. Narendorf, B. Cooper, P. R. Sterzing, M. Wagner, and J. L. Taylor.

"Postsecondary Education and Employment Among Youth With an Autism Spectrum Disorder." Pediatrics 129.6 (2012): 1042‐049.

Autism in Alabama

Appendix A: Helpful Online Resources

1. Autism Speaks Transition Toolkit: https://www.autismspeaks.org/family‐services/tool‐kits/transition‐tool‐kit

2. Navigating Autism Services: A Community Guide for Missouri:

http://dmh.mo.gov/docs/dd/navigationguide.pdf

Autism in Alabama

Appendix B: Transitional and Adult Services

Resource Guide Template I. What is Transition Planning? II. Getting Ready to Graduate from High School

A. Understand your IEP. B. Discuss your dreams, interests, and options. C. Understand what requirements must be met.

1. Alabama State Department of Education (https://www.alsde.edu/sec/sct/Pages/graduationinformation‐all.aspx)

D. Take necessary tests and assessments. 1. ACT Exam (http://www.actstudent.org/regist/dates.html)

E. Look for scholarships or co‐op opportunities. 1. Brian & Patricia Kelly Postsecondary Scholarship Fund

(http://www/autismspeaks.org) 2. Schwallie Family Scholarship Program

(http://www.researchautism.org/news/otherevents/scholarship.asp) 3. Rise Scholarship Foundation Inc. (http://www.risescholarshipfoundation.org)

III. What’s Next? A. Postsecondary Education

1. Work with the Office of Disability Services. 2. Special Programs

a. The University of Alabama ‐ UA‐ACTS program (http://autism‐clinic.ua.edu/uaacts/)

B. Employment 1. Connections – Lakeshore Foundation and Alabama Department of Rehabilitation

Services 2. Alabama Department of Rehabilitation Services, Vocational Rehabilitation

(http://www.rehab.alabama.gov/individuals‐and‐families/vocational‐rehabilitation‐service‐general)

3. The ARC of Alabama Local Chapters (http://www.thearc.org/find‐a‐chapter/alabama)

C. Independent Living 1. Glenwood Autism and Behavioral Health Center – Adult Residences and The Sullivan

Center (https://glenwood.org/services‐resources/services/adult‐services/) 2. Horizons School (http://www.horizonsschool.org/) 3. The Hands (http://aaap‐hands.org)

IV. Life as an Adult A. Making Decisions and Staying Safe B. Medical and Self‐Care C. Social Security D. Other Services

transitional an d adult ser vice s - homepage | outreach · regional networks/system support. anna...

Documents