Ohio Autism Taskforce Report now Available!

[Guest guest]

Dear Friend of ASO:

The Ohio Autism Taskforce Report now Available! A copy of the report follows my signature. It is also available for viewing and downloading at our website www.autismohio.org!

Plans are also finalizing for the Autism Rally at the Ohio Statehouse in Columbus on April 13, 2005. Information on this event is also available on our website. Details are:

Time: 11 am - 12 noon NOTE TIME CHANGE (was originally 10am)!

Location: We will be on the South lawn of the Statehouse (see maps on the ASO website)

Directions: Take I-71 to Broad Street Exit - turn to the West, take Broad Street to Third Street and turn left (South), Statehouse will be on the right after the turn; there is a drop area to let people out on Third Street in front of the Statehouse. To park, continue down Third Street to Rich Street and turn right (West). Park in the CitiCenter parking garages on Rich Street. Walk back up Third Street to the Statehouse for the rally.

Confirmed speakers for the rally are Rep. Jon , Rep. Ken Carano, Sinclair of the Cleveland Clinic, and myself. Other speakers have been asked, but are not yet confirmed.

Please contact your state senator and state representative as soon as possible to set up a meeting with them to discuss the recommendations - either in Columbus after the rally or in your home district. If you aren't able to set up a meeting - please write your legislators. There are 43 different recommendations that cover the spectrum of persons with autism and services for them and their families. Pick the two or three that you are most passionate about and speak to your legislators about those. Your meeting should be short - 15 minutes or less. Have a "bullet point" type list to speak from. Have your information in writing, as well as a copy of the report to give them so that they can refer to your concerns at a later date. Tell a brief personal story of how you are directly impacted by the lack of a particular service. Any letters should be no more than one - two pages. Be clear and to the point! Remember - we want to win legislators over to support our issues, not beat them up or abuse them about the lack of services. Keep the meeting positive!

Please visit our website often for updates! The release of the OAT report provides all of us who are affected by autism a golden opportunity to make our voices heard and advocate for improved services for our loved ones with autism. While some of the recommendations do not come with a price tag, many do. This is going to be one of the tightest budgets in years, with many services being cut. It is imperative that legislators hear that Ohio lags far behind other states in providing services to individuals with autism and other developmental disabilities, and that rather than cutting important services, implementing recommendations of the OAT will save Ohio taxpayers in the long run!

Contact your legislators today! Not sure how to find your state legislators? Visit www.house.state.oh.us, click on “Your Representatives†and enter your zipcode. Visit www.senate.state.oh.us , click on “Your Senators†and enter your zipcode.

Make your voice heard!

Sincerely,

Barbara C. YavorcikPresidentAutism Society of Ohio701 S. Main St.Akron, OH 44311(330) 376-0211fax: (330) 376-1226email: askASO@...home: byavorcik@...web: www.autismohio.org2005 ASO Bi-Annual Conference"Reaching Beyond the Horizon - Challenging the Autism Spectrum"Friday and Saturday, October 14-15, 2005 Kingsgate Marriott in Cincinnati, Ohio

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Ohio Autism Taskforce Report

Introduction

On June 26, 2003 Governor Taft signed into law House Bill 95, biennial budget legislation. Included within the budget bill were provisions providing for the creation of the Ohio Autism Taskforce (OAT). The bill required the OAT to investigate the increasing incidence of autism in Ohio and to determine what, if any, gaps exist in the delivery of services to individuals with autism in Ohio. The OAT was charged with presenting a set of recommendations based upon its findings to the Governor, Speaker of the House, and President of the Senate. The OAT consisted of twenty-two members, eighteen members appointed by the Governor and four members of the Ohio General Assembly. The Governor’s appointments included an individual with autism, parents of individuals with autism, providers, educators, pediatricians, members of the Governor’s cabinet and others interested in and connected to the issue of autism.

The incidence of autism in Ohio is increasing at an alarming rate. It is estimated that as many as 1 out of 250 children are born with this disability. The cause of autism is unknown and there is no cure. Autism is a complex and severe developmental disorder that affects a person’s ability to communicate, form relationships with others, and respond appropriately to the environment. Those affected may avoid making eye contact and lack the ability to read faces for signs of emotion or other cues.

If 1 out of 250 children in this state were being kidnapped, we would declare a statewide emergency. The increase in the number of individuals diagnosed with autism may be the result of improved diagnosis, a real increase in the prevalence, or a combination of other factors. The incidence of autism is growing to epidemic proportions. It is this increase that prompted the creation of the OAT.

The OAT met each month for a year and was divided into five separate committees with the following responsibilities; to investigate how to properly identify and diagnose the disability; to determine the appropriate services for individuals with autism; to recommend appropriate funding for these services; to identify services over the lifespan of an individual

with autism; and to develop a Medicaid waiver proposal for services for individuals with autism in Ohio.

In addition to monthly meetings, the OAT conducted a series of eight regional forums throughout the state of Ohio to hear testimony from parents, service providers, educators and others directly impacted by autism. These regional forums provided a unique opportunity to get directly involved with the work of the taskforce. The personal testimony of persons impacted by autism was vital to the quality of taskforce recommendations.

The work of the OAT was facilitated by the dedication of many individuals. The work of OAT members was complimented by an Advisory Committee of over 30 members of the public who volunteered their time and talents to advance the work of the taskforce. Two individuals working with the OAT deserve special mention here.

ph Dunn, former legislative aide to Representative Jon provided invaluable administrative and logistical support. The efficient and effective functioning of OAT proceedings was directly attributable to Mr. Dunn’s efforts. His passion for the OAT mission and his tireless efforts were notable and facilitated the smooth operation of the taskforce.

Bill Shackleford is a Senior Policy Advisor for the Ohio Department of Mental Retardation and Developmental Disabilities. Mr. Shackleford’s insight into the issues discussed by the OAT and his thoughtful presentation of diverse perspectives was extremely helpful. His contributions were measurable and significant.

Listed below are recommendations approved by the OAT. Some recommendations will require action by the Ohio General Assembly. Others may be accomplished by administrative action. While these recommendations will not be accomplished immediately and are best viewed as an extended action plan, it is critically important that action be taken by decision-makers to make the vision of the Ohio Autism Taskforce a reality in Ohio.

Identification and Diagnosis

ID-1 It is the recommendation of the taskforce that Ohio develop, implement, and maintain the First Signs or equivalent public awareness and training model to screen children for autism in Ohio and that the Ohio General Assembly provide an appropriation for this purpose.

Ø There is no consistent method of screening for autism in the medical community or by affiliated agencies. The American Academy of Pediatricians and Neurologists recommends the use of specific screening tools but they not employed in any consistent manner in Ohio. A model to screen for autism needs to be developed in Ohio to be utilized by pediatricians, childcare providers, school districts, and others to identify at risk individuals. Effective screening will promote early identification and result in access to earlier appropriate interventions.

ID-2 It is the recommendation of the taskforce that Ohio establish a standard practice of autism diagnosis.

Ø There is enormous variability throughout the state and within the medical community regarding the diagnostic process related to individuals suspected as having autism. Inconsistencies and delays in completing a diagnosis and in receiving the diagnosis lead to a delay in providing services.

ID-3 It is the recommendation of the taskforce that Ohio improve the regional capacity to provide a timely medical diagnosis of autism.

Ø Timely and accurate diagnosis of autism spectrum disorders is critical to ensure that children are able to access early intervention and therapeutic services. Waiting lists for diagnostic services range from 6 to 15 months across Ohio, delaying the time when behavioral interventions can begin. These extensive waiting lists reflect a lack of professionals with training and experience in diagnosing children with autism and the increased demand for these services as a result of increased prevalence and awareness of autism spectrum disorders. As screening efforts improve, the need for appropriate diagnostic services is certain to increase.

ID-4 It is the recommendation of the taskforce to develop a comprehensive statewide system to accurately identify the number of individuals with autism in Ohio.

Ø The Autism Society of America estimates that the prevalence of individuals in the population with autism may be as high as 1 in 250, based on studies in two locations conducted by the Centers for Disease Control. There is no comprehensive statewide system for accurately calculating the number of individuals with autism in Ohio. There is much evidence to support a conclusion that the prevalence of autism is increasing in this state, particularly the increased numbers served through public school special education and county boards of mental retardation and developmental disabilities. Accurate prevalence data are essential to plan and provide resources for services that are needed for individuals with autism.

ID-5 It is the recommendation of the taskforce that Ohio develop and implement guidelines to facilitate the timely educational identification of students with autism.

Ø School districts are required to complete a multifactored evaluation for students suspected as having a disability. There is variability throughout Ohio’s educational community regarding the identification of students with autism. Inconsistent identification procedures often lead to significant discrepancies in the level of services provided and inappropriate intervention strategies designed to help the student. Faulty identification also leads to poor, inaccurate prevalence data.

ID-6 It is the recommendation of the taskforce that a statewide registry of individuals with autism in Ohio be created and maintained.

Ø There is much evidence to support that the prevalence of autism is increasing. A confidential statewide registry will provide a mechanism to accurately identify the number of individuals with autism in Ohio, the age at which they were diagnosed, and the services they receive. A registry will facilitate providing appropriate services to individuals with autism in Ohio.

Treatment Services

TS-1 It is the recommendation of the taskforce that an Ohio Autism Center be given responsibility for coordinating services in Ohio for individuals with autism. This body shall seek input from an Autism Advisory Committee.

Ø The Ohio Autism Center will support the regional service delivery system and be responsible for coordinating services in Ohio for individuals with autism. The Director of the Autism Center will facilitate communications and relations with state and local agencies providing services to individuals with autism, with institutions of higher education, with the Ohio General Assembly, parent and professional organizations and such other groups as necessary. An Autism Advisory Committee will support the functions of the Ohio Autism Center by providing professional, technical and policy advice to the Director of the Autism Center.

TS-2 It is the recommendation of the taskforce that Ohio develop a regional service delivery system serving individuals with autism.

Ø Treatment services for individuals with autism involve the participation of many different public and private agencies. There is a serious lack of coordination of services between and among these entities. A regional service delivery plan will address this lack of coordination of services and the regional disparities and inconsistencies that exist throughout the state of Ohio.

It is the belief of the taskforce that the establishment of a statewide autism leadership position and a regional service delivery system in Ohio will facilitate coordination and more fully utilize existing programs and services and will address the disparity of available services throughout the state of Ohio. Regional operations will focus on building the capacity of local communities, organizations, agencies, and families to support children and adults across the autism spectrum in typical work, school, home and community settings.

TS-3 It is the recommendation of the taskforce that a regional disparity of services provided to individuals with autism should be eliminated.

Ø A recent article in the Wall Street Journal (October 19, 2004) stated, “In Ohio, the disparities are even more pronounced, varying from one county to another. Unlike most states, each of Ohio’s 88 counties has to pass its own special levy to fund most community services for the developmentally disabled.†The taskforce found these regional disparities especially pronounced in regard to services for individuals with autism. A regional service delivery system will positively impact this situation. Many recommendations of the taskforce address these regional differences.

TS-4 It is the recommendation of the taskforce that the Ohio Board of Regents and the Ohio Department of Education create an Ohio credential for students preparing to teach individuals with autism.

Ø The taskforce recommends the creation of a college and university level autism teaching credential for teachers who will be working with individuals with autism. This teaching credential should be at the graduate level and attached as an endorsement/validation to a mild/moderate or moderate/intensive intervention specialist license. The taskforce received significant testimony from professors in teacher preparation programs in Ohio suggesting that a separate Ohio credential for teachers who work with students with autism should be created.

TS-5 It is the recommendation of the taskforce that the Ohio Department of Education review and modify rules for local school districts providing Extended School Year (ESY) services to students with autism.

Ø A report from the National Research Council (Educating Children with Autism) recommends that education programs for young children with autism operate throughout the year. This is necessary to ensure these children do not lose the progress made during the regular school year. Currently, the extended school year (ESY) option is the only means of incorporating summer-based programs into a child’s Individualized Education Program (IEP). Consistent with the National Research Council’s recommendations, the Ohio Department of Education’s Office for Exceptional Children should review Ohio’s ESY program and modify the program as needed to appropriately address the unique needs of students with autism.

TS-6 It is the recommendation of the taskforce that an Ohio Autism Center provide technical and educational support to child and adult care centers to assist in providing quality care for individuals with autism.

Ø Testimony provided at regional autism forums indicated a critical lack of adequate day care programs for both children and adults with autism. Parents indicated their inability, in many cases, to obtain day care services for their children. This is especially critical in single-parent households. Lack of care significantly impacts the quality of life of a family with a child or adult with autism.

It is apparent to the taskforce that many day care program providers have a general lack of training or an adequate level of staff to meet the needs of individuals with autism. Day care providers often turn away individuals with autism because of these factors.

TS-7 It is the recommendation of the taskforce that the Ohio Department of Education develop a protocol for social skills training for students with autism.

Ø The report, Educating Children with Autism states; “Moreover, ordinary social exchanges between peers do not usually occur without deliberate planning and ongoing structuring by the adults in the child’s environment. The absence of typical friendships and peer relationships affects children’s motivation systems and the meaning of experiences. Appropriate social interactions may be some of the most difficult and important lessons a child with autistic spectrum disorders will learn.†The Office for Exceptional Children, working together with parent and professional groups, will review the current practices of teaching social skills to children with autism and make appropriate recommendations for developing a protocol.

TS-8 It is the recommendation of the taskforce that the Ohio Autism Service Guidelines be reviewed periodically and expanded to include services for individuals with autism of all ages and to recommend adoption of the guidelines by service providers.

Ø The new Ohio Autism Service Guidelines were designed under the auspices of the Ohio Developmental Disabilities Council to improve the quality of services being provided by public schools and other service providers in Ohio. The development of guidelines is a significant accomplishment. The taskforce recommends the guidelines be expanded to address services for individuals over the age of 22 and should be reviewed and updated on a regular basis. The taskforce recommends that the Ohio Autism Service Guidelines, as amended, be formally adopted and implemented by all public and private programs serving individuals with autism in Ohio.

TS-9 It is the recommendation of the taskforce that the Ohio Department of Education develop an autism endorsement to be obtained by school personnel who demonstrate a specialized level of competency in providing educational services with autism.

Ø There are limited opportunities for effective staff development or professional development programs for educators working with students with autism. Ohio should work to improve the awareness and expertise of school personnel by developing ongoing training as recommended in the Ohio Autism Service Guidelines. Staff working with individuals with autism should have the necessary and appropriate level of training and should maintain credentials throughout their years of service according to best practice guidelines.

TS-10 It is the recommendation of the taskforce that any transportation barriers to receiving services by individuals with autism should be removed.

Ø The lack of transportation is a barrier to a limited number of families seeking appropriate services. It was apparent that some families did not have resources available to travel to locations where services are available. It was not clear to the taskforce the extent to which this obstacle to services is evident in Ohio. The extent to which transportation barriers exist should be studied further.

TS-11 It is the recommendation of the taskforce that the Ohio Board of Regents encourage colleges and universities to develop curriculum for students preparing to practice in professional fields providing services to individuals with autism and their families.

Ø Individuals with autism and their families interact with many professionals related to services they need throughout their lives. There is a general lack of knowledge and training in many professions regarding working with individuals with autism and their families. The Board of Regents should encourage colleges and universities to develop apropriate curriculum for students wishing to practice in these fields.

TS-12 It is the recommendation of the taskforce that the Ohio Department of Health Bureau for Children with Medical Handicaps eliminate an existing exclusion for services with individuals with autism.

Ø The Bureau for Children with Medical Handicaps (BCMH) provides assistance with the costs of medical diagnostic and treatment services for eligible children under age 21. Diagnostic services are covered for children suspected of having autism but treatment services are ineligible as a matter of policy. Children with other types of developmental disabilities (e.g. cerebral palsy, spina bifida, and epilepsy) receive treatment coverage. Children with autism should receive comparable coverage for services such as speech therapy, occupational therapy and physician visits.

TS-13 The Ohio Autism Taskforce supports increased Ohio research activities for the effective treatment of autism.

Ø Currently there is very limited scholarly research being done in Ohio to find effective treatments for autism. The taskforce supports and advocates that appropriate entities apply for grants and other funding to support additional research in this area.

Financing Services

FS-1 It is the recommendation of the taskforce that the Autism Scholarship Program be continued.

Ø The Autism Scholarship Program was instituted by the Ohio General Assembly as a pilot project to provide an educational option to parents of children with autism. The Autism Scholarship provides resources to over 250 Ohio families. It is the recommendation of the taskforce, based upon the compelling testimony of parents receiving assistance under this program, the Autism Scholarship Program should be continued.

FS-2 It is the recommendation of the task force that health insuring corporations and such other insurers as may be applicable in Ohio be prevented from excluding coverage for services provided to individuals with autism.

Ø Many health insurers in Ohio exclude coverage of services for the treatment of autism. The taskforce believes that this exclusion is based on outdated notions of what autism is and whether manifestations of autism can be treated. Other states have moved proactively by prohibiting such exclusions. Some major insuring corporations have changed their policies regarding the exclusion of autism. The state of Ohio can prompt other health insurers to modify their policies by implementing legislation which prohibits this exclusion.

FS-3 It is the recommendation of the taskforce that the special education weighted formula be expanded to provide funding for preschool age children and that the Ohio General Assembly provide an appropriation for this purpose.

Ø The current weighted system of funding special education services in Ohio provides funding for grades K-12. Research has shown that children with autism benefit significantly from appropriate intensive behavioral educational interventions at an early age. Therefore, it is recommended that Ohio expand the weighted system of funding special education in Ohio to include resources for services provided to preschool age children.

FS-4 It is the recommendation of the taskforce that a research study be conducted in Ohio to determine the long term fiscal costs of a lack of appropriate early interventions and that the Ohio General Assembly provide an appropriation for this purpose.

Ø Studies in other states have estimated the cost of providing early intensive behavioral interventions compared to the cost of providing residential and personal care services to adults with autism who do not receive timely and appropriate early interventions. The estimated cost difference is staggering. Ohio should conduct a study using Ohio data to determine the cost-savings, if any, of providing early intervention services.

FS-5 It is the recommendation of the taskforce that the Ohio General Assembly create an Autism Awareness license plate and that the proceeds from the sale of such be distributed to the Autism Society of Ohio to promote programs benefiting individuals with autism.

Ø Ohio’s license plate program requires that legislation be passed approving a specific license plate designation. The proceeds from the sale of license plates may be designated for a particular purpose. The state requires that a minimum number of plates for a specific purpose be sold in order for the plate to be offered for sale in the future.

FS-6 It is the recommendation of the taskforce that the Ohio General Assembly update the special education weighted formula to reflect current costs of providing services to individuals with disabilities. It is further recommended the Ohio General Assembly provide an appropriation to fund the special education weighted formula at 100% of costs.

Ø The Ohio General Assembly adopted the current weighted system of funding special education services in Ohio in 2001. It is based on the cost of providing services according to the nature of the student’s disability. The taskforce acknowledges that the costs for providing these services have not been updated since the original cost report. The costs and the weights need to be updated. The Ohio General Assembly is currently funding the special education weights at 90% of costs. The Ohio General Assembly should fully fund the special education weights.

FS-7 It is the recommendation of the task force that the Ohio General Assembly increase the appropriation for special education catastrophic funding to reflect increased school district costs.

Ø The Ohio General Assembly funds “catastrophic special education†costs for all disability conditions, except for speech-only. Local education agencies are reimbursed for more than 50% of the costs above $25,700 for students in the special weighted funding categories 2 through 5. In category 6, which includes children with autism, the threshold is $30,840. Joint vocational school districts and community schools are also eligible to receive this reimbursement.

FS-8 It is the recommendation of the taskforce that the Ohio Department of Education fully fund the parent mentor program and that the Ohio General Assembly provide an appropriation for this purpose.

Ø Parent mentors are employed cooperatively by school districts to assist parents of children with disabilities in working as partners with school personnel to better meet the needs of their children. Parent mentors provide training, technical assistance on many special education procedures, mediate disputes and conflicts before they escalate, and other advice on the development of individualized education programs (IEPs). Currently, 60 mentor projects are funded at a cost not to exceed $24,375 per parent mentor.

FS-9 It is the recommendation of the taskforce that Ohio adopt an incentive program to retain and attract a broad spectrum of students preparing to serve individuals with autism in professional disciplines. The incentive program may include but not be limited to loan forgiveness, tax credits, tax deductions and such other appropriate measures as determined by the Ohio General Assembly.

Ø The taskforce received testimony across the state regarding a need to provide incentives as an attraction to students to teach children with autism and incentives for current teachers to gain more knowledge and skills in this rapidly challenging area of education.

FS-10 It is the recommendation of the taskforce that the Ohio General Assembly provide adequate resources to enable Ohio Legal Rights Services to account for an increase in cases involving individuals with autism.

Cases handled by Ohio Legal Rights Service (OLRS), increasingly, involve individuals with autism. In 2004 OLRS handled 748 special education cases, of which 22% involved an individual with autism. Ohio Legal Rights Services should be able to account for this rapid increase and the organization should be provided with resources to adequately handle cases under its jurisdiction.

FS-11 It is the recommendation of the taskforce that the Ohio General Assembly create tax incentives for Ohio’s employers providing meaningful employment opportunities for individuals with autism.

Ø The taskforce understands the importance for individuals with autism to participate meaningfully in the workforce. Individuals with autism may have particular attributes conducive to employment but many also confront unique obstacles in the workplace. The willingness of employers to make reasonable accommodations of particular concerns (sensitivity to noise, an inordinate reaction to the disruption of routine, environmental change) is frequently necessary. Tax incentives for employers willing to make these accommodations and provide employment opportunities to individuals with autism will increase the number of employment opportunities available to persons with autism.

FS-12 It is the recommendation of the taskforce that the Ohio General Assembly enact legislation increasing accountability of school districts for dollars expended for special education in Ohio.

Ø School districts in Ohio receive local, state and federal resources to provide special education services to students with disabilities. School districts must be accountable for how this revenue is expended. The Ohio General Assembly should enact any legislation deemed necessary to ensure an appropriate accounting of these public funds.

FS-13 It is the recommendation of the taskforce that the state and federal government fully fund special education programs and services.

Ø When Congress first passed the Individuals with Disabilities Education Act (IDEA) in 1975, the notion was that Congress committed to pay up to 40% of the national average per pupil expenditure (APPE) to offset the excess cost of educating children with disabilities. Current calculations now put the federal share at 18.7% in fiscal year 2005. Specifically, in fiscal year 2005 IDEA grants to states are funded at nearly $10.6 billion. In the new Individuals with Disabilities Education Improvement Act (December 2004) Congress has changed the basic special education formula. Beginning in fiscal year 2007, the maximum grant will be 40% of the APPE times the number of children with disabilities the state served in school year 2004-2005 adjusted by the annual rates of change in the state’s population in the age range comparable to ages for which the state provides FAPE for children with disabilities (in Ohio, ages 3 through 21) and in the state’s children living in poverty in the same age range. It is vital to continue to urge Congress to increase its commitment to funding so as to fully meet its obligation to support the appropriate education of students with disabilities.

FS-14 It is the recommendation of the taskforce that Ohio maintains or increases funding for programs serving individuals with autism.

Ø The taskforce was mindful of the resource limitations facing all levels of government. Nevertheless, the quality and quantity of services provided to individuals with autism in Ohio is dependent upon an adequate amount of resources sustaining these programs. It is critically important that the level of support for programs providing services to individuals with autism be maintained at current levels or, ideally, be expanded.

FS-15 It is the recommendation of the taskforce that the Ohio General Assembly enact mental health parity legislation.

Ø Autism is not a mental health disorder. However, significant portions of individuals with autism have severe behavior problems. Parents of children with autism experience unusual and ongoing stress. Mental health parity legislation will make mental health services more accessible to individuals with autism and their families. Keeping families together and avoiding costly residential or psychiatric treatment are more likely if mental health services are available.

FS-16 It is the recommendation of the taskforce that the Ohio General Assembly enact Medicaid Buy-in legislation.

Ø As noted in Thinking About Medicaid Buy-in Enrollment Projections for Ohio: Lessons from Other States, Medicaid Buy-in legislation is "widely viewed as one of the most critically important reforms to help people with severe disabilities gain and keep employment that will enable them to contribute to their well-being." Under Medicaid Buy-in provisions, individuals will pay a premium to receive Medicaid benefits. Many individuals with autism have the intellectual capacity to work, but have social and behavioral problems that limit their capacity for gainful employment. In addition, many rely upon Medicaid for expensive services not reimbursed through other mechanisms. With the availability of Medicaid, for which they would pay a premium, they will continue to benefit from the services and supports available to them with Medicaid and will contribute to the tax base.

Across the Lifespan

AL-1 It is the recommendation of the taskforce that Ohio develop an Autism Resource Manual which will include regional services available and regional service providers. The manual should be available online, for public distribution, and at public libraries throughout Ohio.

Ø An Autism Resource Manual will provide information regarding medical, social, educational, and other resources available to parents in Ohio. Input received from parents at many of the regional forums clearly indicates a need for parents to have ready access to comprehensive information about services and resources available for their children with autism.

AL-2 It is the recommendation of the taskforce that there be created a statewide standard and protocol for the effective transition of individuals with autism from one service system to another.

Ø There is no coordinated system to guide parents through difficult periods of service transition. Individuals with autism must transition from early intervention services, to a service system operated by local school districts, and to a system which provides services to adults with autism. Many parents testified to the taskforce that these transitions were very difficult to navigate. To address these concerns a statewide standard and protocol for transitioning individuals and their families should be established and promoted.

AL-3 It is the recommendation of the taskforce that the quality and quantity of family support services available in Ohio should be increased. These family driven services will include, but not be limited to home modifications, respite care, advocacy, care giving, transportation, and family training.

Ø Many parents testifying before the taskforce highlighted the financial and emotional strains caused by a lack of adequate support services. The need for support services acknowledges the impact of the disability upon the entire family. Many testified to the need of respite assistance so that the rest of the family could attend church or activities of other children.

AL-4 It is the recommendation of the taskforce that an Ohio Autism Center provide continuing education to professions and occupations in the State of Ohio in regard to the attributes and characteristics of individuals with autism and to assist in serving individuals with autism. This shall include but not be limited to continuing education for employees of state and local agencies providing services to individuals with autism.

Ø There is a general lack of training opportunities for professionals coming in contact or working with individuals with autism. This has created a significant gap in services. Testimony from parents provided numerous instances in which public agency staff, with whom they were working, simply did not have sufficient knowledge regarding individuals with this disability. There is a wide spectrum of professional or service personnel who periodically come in contact with individuals with autism who need to be aware of the particular characteristics of this population.

AL-5 It is the recommendation of the taskforce that a statewide analysis be performed to determine whether individuals with autism in Ohio are inadequately served with vocational, adult day care, residential and supported living services.

Ø Community awareness of autism, until recently, was not widespread. Accordingly, individuals with autism who use or need particular services may not have been appropriately identified. One indicator of the need for specialized residential care is the reportedly long waiting lists at residential facilities serving individuals with autism (e.g. Bittersweet Farms and Ardmore). A statewide analysis will determine the extent to which these services are being provided in Ohio and whether the particular needs of individuals with autism are being met.

AL-6 It is the recommendation of the taskforce that the Ohio Rehabilitation Services Commission and the Ohio Department of Development promote appropriate employment opportunities for adults with autism.

Ø The Ohio Rehabilitation Services Commission and the Bureau of Vocational Rehabilitation provide assistance to individuals with disabilities, including autism, and help to prepare individuals for employment. The Ohio Rehabilitation Services Commission, partnering with the Ohio Department of Development, should develop a strategy focusing on the unique strengths, skills and needs of individuals with autism in order to maximize employment opportunities.

Waiver Services

WS-1 It is the recommendation of the taskforce that a Medicaid home and community based waiver for individuals with autism be submitted to the Centers for Medicare and Medicaid Services (CMS) and implemented upon approval.

Ø State departments were given the authority in the State Fiscal Year (SFY) 2004-2005 budget to apply to the federal government for a home and community based waiver for either early intervention services or autism services, or both. The Governor’s Access Report 2004 recommends the Ohio Autism Taskforce work with state departments to develop a similar budget provision for inclusion in the SFY 2006-2007 budget. Medicaid waivers represent an important funding alternative in resource limited fiscal environments such as that currently experienced by state governments. The State of Ohio should apply for a waiver(s) in the near future.

WS-2 It is the recommendation of the taskforce that the Ohio Department of Mental Retardation and Developmental Disabilities allow the reallocation of permission to serve children on a waiver among counties in order that waiver opportunities for children with intensive needs do not go unutilized.

Ø The Medicaid redesign of mental retardation and developmental disability services begun in House Bill 94 (124th General Assembly) established priorities for enrollment on Medicaid waiver services. One priority a County Board of Mental Retardation and Developmental Disabilities (CBMRDD) could identify was children with intensive needs. A statewide limitation of 400 during the biennium was placed on the number of children who could receive priority enrollment for the Individual Options or Level One waivers created by this legislation. Due to the Ohio Department of Mental Retardation and Developmental Disability’s (ODMR/DD) allocation formula to county boards, the statewide number has not been reached. The taskforce recommends that ODMR/DD should reallocate any unused permissions for priority enrollment to county boards who have the resources and choose to use waiver slots to serve this group.

Representative Jon , Chair

Ohio House of Representatives

Caruso, Vice-Chair

Autism Society of Ohio

Mike Armstrong

Superintendent’s designee, Department of Education

Georgia Backus

Rich Center

Dr.

Director’s designee, Department of Health

Ken Carano

Ohio House of Representatives

Effie

Parent of child with autism

Fedor

Ohio Senate

Kissel

Ohio Developmental Disabilities Council

Doug Krinsky

Parent of child with autism

Rory McLean

Parent of child with autism

Dr. Manning-

Cincinnati Children’s Hospital Medical Center

Ohio Association of County Boards of MRDD

Dr. on

Oakstone Academy

ph Napoli

Toledo Children’s Hospital

Opperman

Highland Local Schools

Dr. Nevada

Developmental Pediatrician

Barbara Riley

Director Department of Jobs and Family Services

Schostek

Parent of child with autism

Bill Shackleford

Director’s designee, Department of MRDD

Lyn Wachtmann

Ohio Senate

Sondra

Individual with autism