State Autism Map Desired Endpoint, Limiting Factors, Possible Solutions Desired Endpoint (DE) 1. Research related to autism cure and prevention will be completed, coordinated, and validated findings will be implemented Why is this an appropriate goal for the State of Texas? – Any person with Autism Spectrum Disorders (ASD) who is severely affected is eligible for state institutional care at an annual cost in 2008 dollars of approximately $125,000 per person. There is no limit to this entitlement for Texas citizens and as the number of adult age people with autism in Texas increases rapidly so will the total cost of this entitlement. This entitlement is the most expensive and generally most ineffective placement option available... Most Texans would agree that caring for the disabled is the right thing to do, and since Texas government is a representation of its citizenry’s priorities and morality, it is appropriate that we as a people be judged by our care for the weakest among us. For the general good of it’s citizenry it is vital for Texas to remain competitive both state to state and worldwide. To accomplish that Texas must combine the economic focus of holding costs down while maximizing productivity and the desire to keep the high moral standards which our state was founded on. Curing and preventing Autism is the clearest way to achieve those goals. 1.1Limiting Factors (LF): Who is managing this research? Is the roadmap applicable? 1.2LF: Is the research funded appropriately? 1.3LF: Are Texas's academic and research institutions plugged in to the national effort? 1.4LF: How is research information being collated? and is this effective? 1.5LF: How is the collated information being translated then diseminated? Is this working? 1.6LF: Is disseminated information being implemented? Is this working? DE 2: All children in Texas will be screened for ASD at the earliest time possible and children at risk will quickly be assessed and monitored using the best comprehensive assessment method available. Why? - For children with ASD the research is clear: the earlier quality treatment is implemented the better the outcome. Autism is unique among severe disabilities in that a dollar spent today on early intervention will return 5 dollars in reduced levels of care needed in the future. The appropriate state response to autism is to identify all children as soon as possible with an accurate and clear diagnosis of their condition and co-conditions 2.1LF: Disagreement on screening best practices Find and package for cheap delivery a screening training package. Find and fund advertising and delivery plan. Plans from other states all recommend the Modified Checklist MCHAT (16-30 months) for use in screening. 2.1.1S: General agreement on modified MCHAT (ages 16-30 mos.) as current instrument 2.1.2S: Universal screening protocol is adopted for ASD to be utilized by physicians, pediatricians, healthcare providers, and child serving agencies 2.2LF: No universal way to ensure screening because doctors are private Legislative mandates enacted or proposed in other states. American Academy of Pediatrics recommends strongly. 2.2.1S: Legislation to mandate screening of all children at 18 months and 2 years through doctors, county health departments, Head Start, child care workers 2.2.2S: Provide scholarships or incentives to professionals for continued professional development in autism 2.2.3S: Training should make use of technology and facilitate ease of gaining training 2.3LF: Difficulty in screening method reduces ability to train doctors in a mass way 2.3.1S: One hour mandatory CME course on autism for license renewal 2.3.2S: Screening Education Pilot Project administered in certain counties and is administered by the Texas Chapter of the American Academy of Pediatrics. 2.4LF: Current behavioral screening methods have less than optimal sensitivity and specificity 2.4.1S: IBR scientists developed the PDD Behavior Inventory (PDDBI) rating scale for children 2.5LF: Comprehensive assessment teams don't know who/where to send diagnosed patients for quality intervention This should consist of TEA, DADS, DARS, etc. and a university or medical school as well as HHSC collectively in the determination of assessments and protocols. 2.5.1S: 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 Texas. One of these currently exists for Ohio and Texas has already been given permission to use their manual and merely change the Ohio specific information and substitute Texas information. 2.5.2S: Create statewide service standards for research based best practice educational and other support services for children and youth with ASD 2.5.3S: Create an incentive program to retain and attract a broad spectrum of students preparing to serve individuals with autism in a variety of professional disciplines. The incentive program may include but not be limited to loan forgiveness, tax credits, tax deductions and such other appropriate measures There are very few assessment "teams" in the state. Definition of "quality intervention" is needed. Dearth of appropriately trained providers. 2.6LF: Enough doctors and doctor's offices are not currently trained to screen 2.6.1S: One hour mandatory CME course on autism for license renewal 2.6.2S: Screening Education Pilot Project administered in certain counties and is administered by the Texas Chapter of the American Academy of Pediatrics 2.6.3S: Develop specific training and training expectations for allied health professionals and others who interact with or could screen people with ASD (medical/dental professionals, EMT’s, etc.) 2.7LF: Doctors when a screening test is failed don't know who to send them to for diagnosis. Waiting lists are extraordinarily long if they do. 2.8LF: Disagreement on assessment best practices 2.8.1S: Develop regulations to determine which evaluation instruments should be used by all private providers and school districts. A group including TEA, DADS, DARS, etc. and a university or medical school as well as HHSC should do this collectively. This should eliminate transition problems between private intervention providers and school districts. 2.8.2S: Establish a committee of major stakeholders to adopt screening, diagnosis, and assessment standards. Encourage Texas legislature and Governor to meet with and request that the TX congressional delegation lobby for this. 2.8.3S: Promote the use of telemedicine in diagnostic assessments, particularly in rural areas. 2.9LF: When people are referred to ECI a comprehensive assessment is not a priority because they don't want intervention to discriminate based on diagnosis In other words, they do not provide diagnoses when they perform their intake assessments. 2.9.1S: ECI should be required to administer ASD screening instrument on all intakes. They can refer the child on to a diagnostic clinic if the result is positive for ASD and still not diagnose the child themselves. (see 2.1.1S) 2.10LF: Many assessments are done to produce a diagnosis but do not produce the foundation of an individualized treatment plan 2.10.1S: Establish a committee of major stakeholders to adopt diagnostic recommendation, referral, and treatment standards. (see 2.8.1S) 2.11LF: Limited quality assessment sites and personnel (including private sector, ECI, school districts) result in long waiting lists or inability to be assessed. 2.11.1S: Create regional Centralized Assessment Teams (CAT). These should include parents, Multidisciplinary Evaluation Team members, medical consultants, and others to complete a comprehensive multidisciplinary assessment. They should use diagnostic evaluation standards adopted by state. 2.11.2S: Make better strategic use of existing resources such as County public health offices and MHMR clinics. 2.12LF: Educational diagnosis is geared toward offering services or not and is often not a best practice assessment Appropriate special education services are the only entitlement service children with autism receive. For many, this is the only treatment for their disorder that they ever receive. 2.12.1S: Change the existing IDEA law to allow automatic eligibility for children who have received a medical diagnosis of ASD. 2.12.2S: Eliminate the term “educational diagnosis” and any distinctions made between medical diagnosis and educational diagnosis. Have the Texas legislature and Governor lobby the TX congressional delegation make changes to IDEA. Substitute "educational need" for "educational diagnosis". 2.12.3S: Establish a committee of major stakeholders to adopt screening, diagnosis, and assessment standards applicable to all service providers in the state, including TEA and LEA's. (see 2.8.1S) 2.12.4S: Legislature to instruct TEA to mandate that all LEA's perform standardized assessment protocol. 2.13LF: Cost of comprehensive screening is prohibitive due to problems with insurance, Medicaid, ECI, uninsured, and other forms of payment. 2.14LF: There does not exist a quality diagnostic biological marker for autism (see 2.1.1S) 2.15LF: Limited assessment sites with multilingual personnel 2.15.1S: HHSC, DADS, and TEA in collaboration will identify and support leadership for a regionalized system of autism diagnostic clinics. This model can use or expand upon available resources to increase access to timely diagnostic evaluations by improving geographic access and reducing wait times for clinical appointments. 2.15.6S: A standardized diagnostic protocol will be implemented that will be accepted by all entities for access to services. DADS and TEA in particular can supply multilingual assessment staff and materials. (see 2.8.1S) 2.16LF: We do not have identified the breakdown of populations to be screened The definition of screening means "all", so there would be no population breakdown...ALL children are screened. CHIP Private Insurance - ERISA Private Insurance - State Regulated Medicaid Insurance - Is this Texas Health Steps? No insurance - rural No insurance - city Daycare Preschools CPS - case workers Headstart 0-5 ECI 0-3 PPCD - 3-5 Local Education Agency 5 and up MRA Community Centers? Piggyback vaccination initiatives? Train mothers in prenatal care? Public Clinics? Federally Qualified Health Centers? Parent Screening possible under AAP? Parent training? Military Families? Hospitals? Overall Public Awareness to reach individuals and their families Texas Association of community health centers Promitorus - community health workers association Midwives association? School of public health - can be used to train officials County extension agents - Agrilife - Foster - DFPS Child placement agencies - DFPS 2.17LF: Many parents don't know enough about typical developmental milestones to recognize when to be concerned so they are not driving the request for screening Prenatal education programs Post natal education programs 2.17.1S: Implement a coordinated multi-media effort, to raise public awareness about ASD. Collaboration with the Public Broadcasters Association or similar group. Could use federal Combating Autism Act funding (when available) or private foundation dollars. 2.17.2S: Launch a Texas Autism Awareness Campaign to inform the general public. Development of a comprehensive autism initiative that includes a public awareness effort. This can be one prong of a well-developed strategic plan initiative. 2.17.3S: Develop free on-line training module This can be a comparison of typical development vs. atypical 2.18LF: There is the medical to treatment track and the education to treatment track, different systems with different strengths and weaknesses. Often times medical or educational needs are not met because the entry point comes from a different paradigm. 2.18.1S: Establish data sharing protocols among state agencies. This will provide accurate information for planning of services for school-age children and youth with ASD. 2.18.2S: Create an autism initiative with multi-pronged goals, including coordination between various federal, state and private funding sources. This will help create efficient and seamless delivery of services. 2.18.3S: Sign an MOU between the Texas social service agencies and TEA. Make DADS the lead agency for autism with this agreement. This will help to coordinate all treatment tracks and develop an integrated wrap around system of ASD services similar to the Fort Worth SAMSHA grant. 2.18.4S: Create a statewide standard and protocol for the effective transition of individuals with autism from one service system to another. 2.18.5S: Legislature to fund enhanced professional development across all systems. Currently, by stakeholder report, many caseworkers do not even know basics about their own Medicaid waiver programs or services, much less about other systems. DE3: Families of children who are at risk or diagnosed with ASD will quickly be educated about a clear path forward, based on quality scientific evidence with realistic information about the shared responsibility that will be needed on that path. Current research indicates that on average 6 precious months pass between diagnosis and implementation of the first autism treatment. Furthermore many caregivers report spending significant time using an autism treatment they later learned was not the most appropriate for their child. The appropriate state response to autism is to ensure caregivers are not turned into amateur researchers when quality information and guidance is so easy to produce and disseminate with today’s technology. Since pursuit of a best path outcome cannot be attained without significant sacrifice from the caregiver and the state cannot force a caregiver to make these sacrifices, the appropriate state response is to at a minimum provide clear information so the caregiver can make critical choices fully informed of the consequences of their decision. 3.1LF There is no state agency that views this as their role, has been tasked with this, or is funded to deliver this education If entry point is ECI, then they offer only their solution as good enough. 3.1.1S: Task ECI with this and utilize a wraparound case management model. Develop a specific protocol for them to follow, including referring parents to the Texas Autism Resource Center (TARC). 3.1.2S: Use the Texas Autism Resource Center (TARC) and include development and dissemination of information as part of their role. The TARC can adopt already developed information (i.e. Ohio parents guide with TX info substituted where appropriate, see 2.5.1S) or create original information to disseminate to parents including referral to local resources. 3.2LF There is disagreement on what a clear path should look like - The scientific evidence has limitations. We have some group research that shows group effectiveness however not research that allows us to choose a best path for each individual. Consumers of research often go beyond the limits of generalizability of individual research studies. Comparative research of treatments has not been completed for groups or individuals. 3.2.1S: Develop and disseminate resources discussing best programs including the evidence base 3.2.2S: Texas (DADS, DARS, etc.) adopt the scientifically-based New York treatment guidelines for use in Texas. 3.2.3S: DARS autism program to develop and evaluate efficacy studies on functional outcomes of children going through the autism program. 3.3LF There is a reluctance to educate consumers about services they might need but a particular agency or group doesn't or can't offer 3.3.1S: Agencies refer families to the TARC to receive information on possible treatments, resources in their area, etc. The TARC can also send appropriate families to the DARS autism program waiting list. 3.3.2S: ECI should develop a specific protocol for referring families to the TARC for more information for those children who have positive outcomes on autism screenings (MCHAT - 16-30 mos.) TARC should also develop a "script" or protocol that includes referral to DARS autism program waiting list (similar to proposed ECI script listed in 3.1.1S). 3.3.3S: Continue legislative expansion of insurance laws and rules to include ages up to and over 21, Medicaid, CHIP, etc. This will allow more individuals to access services. 3.4LF If this first contact is made within the school district the special education system (IDEA and FAPE) create an environment where focus is placed on the minimums to be provided instead of educating the family on what the best path could be. 3.4.1S: Legislate for state code and rules to require more than minimum outcome. Other states have done this. Some have legislated for maximum outcomes. 3.4.2S: Improve transparency of school spending. Legislate that school districts adopt generally accepted business budgeting and accounting measures for clarity on how current money is spent. 3.4.3S: LEA's should adopt measurement, collection, and reporting practices using data on functional outcomes for students with autism. This can then be collected into a "report card" similar to the TAKS reporting. (See SB 2083 from this legislative session). This can then be tied to incentives for districts that produce best outcomes. 3.5LF There is a reluctance to give consumers bad news, even if the news is accurate and helps families make informed decisions and share responsibility for outcomes PPD NOS is sometimes used as an avoidance technique because people don't want to give bad news. 3.5.1S: New DSM to be released in 2012. PDD-NOS will not be included. Instead, diagnostics are ASD with level of severity. 3.4.2S: All entities to refer families to TARC for more information. 3.6LF Some parents and caregivers limit pursuit of a best path because they may not willing/able to take shared responsibility 3.6.1S: TARC to develop culturally and economically sensitive information for dissemination. 3.7LF Doctors, assessment sites, private sector assessment professional, etc. are not clear that this is their responsibility and do not have the information on how to accomplish this. Sometimes they cannot do this because they do not have this information. 3.7.1S: Develop informational brochures for the TARC. Encourage all providers to send newly diagnosed or other families needing info to TARC. 3.8LF Children with early social communication disorders who have not yet developed full syndrome ASD, because of a lack of ASD diagnosis, are not getting on an intensive treatment path during this most critical period. 3.8.1S: Continue DARS autism program expansion. 3.8.2S: DARS program to ensure one of program outcomes is focused on social communication. 3.9LF Size of the effort 3.9.1S: Ensure final plan is sufficiently detailed with specific action steps and timelines. 3.9.2S: Focus on "do-able" aspects that can be built upon. DE 4: Families pursuing evidenced based practices which produce best outcomes will not be constrained by knowledge, money, or treatment and education availability. The state’s interest lies with maximizing best outcomes and quite clearly if a willing caregiver cannot pursue a best outcome, or has to settle for pursuing a less than best outcome because of a structural problem the state’s interest has not been achieved. 4.1LF A large proportion of autism treatment is done within the school districts and the IDEA and FAPE system are not designed to maximize outcome but rather delineate a minimum level School districts are not responsible for "treatment". They are only required to provide equal access to educational opportunity. Fifth circuit case law has established "minimum" standards based on old IDEA laws. New IDEA contains language concerning "maximize opportunity" in some sections, but no new case law yet established based on IDEA 2004. Actual IDEA 1997 language did not mandate "minimum", but "adequate", which remained undefined in the law. 4.1.1S: Legislate that TEA and LEA's should provide a specific level or a maximum potential level outcome. Some states have already done this, and consequently are the most progressive states for children with autism to reside in. 4.2LF The science on autism treatment has limits and there is disagreement on how to produce best outcomes. Simpson document outlines best practices based on research for educational interventions and treatments. 4.2.1S: Push for a sunset of TEA and complete reorganization of the agency. Until the leadership and outlook of TEA changes with new leadership and employees and legislative directives, things are not likely to change significantly. TEA and the state of special education seem to be the weakest link in the equation of providing appropriate services and treatment. 4.2.2S: Council can offer grants to universities that provide research studies on the most effective treatments. 4.3LF School districts often are not aware of what science based practices are for autism even though they are required under IDEA In the past, TEA has not required districts to get training on best practices for autism. 4.3.1S: Develop a working autism training center/resource center. This particular solution solves a number of problems on this list in addition to this one. 4.3.2S: Explore creating centers of excellence for training 4.3.3S: TEA Region XIII's new autism central function site should collaborate with DADS and other agencies to make the information as available and comprehensive as possible. 4.3.4S: Reinstitute an autism specialty certification for teachers who have extensive training in science-based practices. 4.3.5S: TEA should require an autism specialist in every district that has more than a predetermined number of students with autism. 4.4LF The minimum definition of FAPE as it relates to autism treatment is not well defined FAPE is actually defined by case law, not by IDEA. DD council states “All people with disabilities in Texas should have the opportunity to achieve their maximum potential for independence, productivity and integration into the community. 4.4.1S: Legislature could define what FAPE means in Texas. 4.5LF Schools often do not provide FAPE Due process system in Texas is very flawed. Parents and parent attorney's perceive that system is stacked against them. Instead of pursuing legal options to gain FAPE, parents withdraw their students to home school, resulting in a "silent cleansing" of students with autism from Texas public schools. 4.5.1S: Enhance the ability of local school districts to access state funds. This could include catastrophic aid funds to support the high cost of intensive educational needs of children, such as those with ASDs 4.5.2S: Improve the TEA accountability system. This could include using independent auditors to review district records instead of current TEA and LEA employees, hiring hearing officers and mediators who are trained in law but have not worked for a LEA or TEA in the past, requiring more frequent TEA audits, and putting some teeth into the corrective actions required for districts that fail. 4.5.3S: TEA establishes a program standards and coordination of program capacity requirement and supportive services. 4.6LF The options available to parents when FAPE is not provided are onerous, cumbersome, and significantly discriminate against people without significant financial and educational resources The system as it now exists contains significant inherent bias. 4.6.1S: Legislative change of due process hearings from TEA to SOAH. 4.7LF TEA is caught between the sometimes conflicting demands of a leadership role and a regulatory role for districts 4.7.1S: Restructuring of TEA into two structures...training and enforcement/compliance modes 4.8LF TEA and advocates/vocal parents appear to have a basic disagreement as to whether or not there are any significant problems to be addressed in the current special education system Previous Sunset Commission report appears to back parent’s perceptions and experiences and suggested move of due process hearings from TEA to SOAH. 4.8.1S: Comprehensive fiscal review and analysis of current TEA spending on programs and services for ASD including service center monies for attorney trainings. 4.8.2S: Creation of autism scholarship program to create competition and thus improve services. 4.8.3S: Implement a "funding follows the student" to the public school of the parent’s choosing 4.8.4S: Change charter school rules to create specialized ASD charter schools to enhance educational opportunities. 4.8.5S: TEA and ESC's should promote side-by-side trainings on all issues instead of the current us/them model. This would at least start to end the "us vs. them" perception parents have. 4.9LF Educational Service Centers can create training but there is no way to ensure teachers get that training Site-based management was passed into law several sessions ago by the legislature. This made all training and other decisions a local option. 4.9.1S: Change SBEC recertification to require CEU's consist of at least 6 hours of ASD training. 4.9.2S: ESC's to develop free (or minimal cost) ASD online training for teachers that produces CEU's. This can be done at the teacher's convenience. It will not require time off from work, or incur additional LEA expense for substitutes, etc. 4.9.3S: ESC's to employ better use of technology to make training easier to access. This can enable rural districts, co-ops, and just busy teachers to participate in evening and Saturday trainings and reduce the need and cost of substitutes, travel, etc. 4.10LF There are limited professionals who understand and can implement best practices Professionals are often not trained in how to facilitate a parent/professional partnership 4.10.1S: Redevelop specialty teaching certification for autism 4.10.2S: Develop university level course offerings focusing on aspects of autism. Require course for all special education teachers. 4.10.3S: Institute a "highly trained" certification for ASD. “Highly trained” would mean that providers have both academic and practicum experiences specific to autism in the areas of knowing the nature and causes of autism, assessing individuals with autism and designing intervention plans, and using validated intervention techniques appropriately 4.10.4S: Institute a comprehensive training plan pursuant to a written contract between TEA and the ESC's regarding ASD. Clearly set forth the duties and obligations regarding ASD's and the goals and objectives of the program that is developed. 4.10.5S: Mandate that professional development plans include yearly ASD training for all teachers at the local level. Ensure all trainings offered to teachers include previously identified core competencies. 4.10.6S: Mandate all university teacher preparation programs for both general education and special education require courses with courses and a practicum in behavioral interventions and other methods used in best practices for children with ASD. Coursework and practicums in classroom behavior analysis will improve education for all students. 4.10.7S: Mandate all community colleges include classes in ASD and behavioral strategies used in teaching individuals with ASD for teachers, paraprofessionals and parents. 4.10.8S: TEA requested to develop cohesive, statewide rules for administering a menu of appropriate services based on best practices in the treatment of those with ASD. These would include items such as the current autism supplement; however, the wording would need to be even stronger to ensure mandatory, true consideration at all ARD meetings. 4.10.9S: TEA priority to increase the number of trained education professionals educating children with ASD. These activities should include 1) in-service training for current regular and special educators, 2) establishing an expert within each school district for 2009-2010 the next year on autism and behavioral intervention treatment, and 3) establishing within the next 2 years an expert within each school site. 4.10.10S: Establish an ASD certification process for paraprofessional education aides. Develop and set paraprofessional salary levels, based on a tier system of meeting defined competencies. 4.10.11S: Require the addition of a definition of “appropriately trained” which applies specifically to teachers and paraprofessionals who work with students with ASD's. This could either be within the Texas Administrative Code or within the Commissioner's Rules Governing Special Education. 4.10.12S: Provide incentives to increase number of skilled professionals to work with ASD students. These could include items such as tuition reimbursement, loan forgiveness, etc.. It could also be weighted for those who work in more remote, rural areas of state or for those who continually increase their training levels. (more training, more perks) 4.10.13S: TEA, DADS, HHSC, and other state agencies should work with local colleges and universities to create and improve training and licensing programs for teachers gaining certification. 4.10.14S: TEA should be instructed to take a proactive role in developing and implementing a consistent educational standard of practice for students with autism. Each, and every, school district should be held accountable to the same developed standard of practice. 4.10.15S: Create appropriate oversight procedures and require accountability from each ESC regarding participation of each district in their service area. Use this accountability data to issue ESC and LEA "report cards" (similar to TAKS "recognized" status reports) for ASD services. 4.11LF ECI as a direct service organization is not designed or funded to handle intensive intervention based on scientific best practices Several other states are requiring a minimum of 25 hours of direct contact per week (therapy) for ECI children with or suspected of ASD. 4.11.1S: Legislatively or administratively through DADS restructure how ECI provides services. 4.11.2S: ECI and Head Start partner to provide more intensive interventions for children diagnosed or suspected of having ASD. 4.11.3S: Redesign the funding structure of ECI. 4.12LF CPT or HCPCS Codes for science based autism treatment do not exist 4.12.1S: Create CPT and HCPCS codes through the Medicaid system for these treatments. Often, private insurance follows the lead of Medicaid and Medicare. 4.13LF Health Insurance companies do not currently have in- network provider status for intensive treatment professionals 4.13.1S: Provide state incentives for insurance companies who provide a predetermined level of in-network providers of these services. 4.14LF Insurance reimbursement in general is lacking, creating financial limitations to services. 4.14.1S: Formally request the Texas federal congressional delegation to introduce legislation amending the federal Employee Retirement Income Security Act (ERISA) to incorporate a mandate for covered insureds diagnosed with ASD for coverage. Formally request the Texas federal congressional delegation to introduce legislation amending the federal Employee Retirement Income Security Act (ERISA) to incorporate a mandate for covered insureds diagnosed with ASD for coverage. 4.15LF Insurance reimbursement is lacking creating no market for professionals. 4.15.1S: Formally request the Texas federal congressional delegation to introduce legislation amending the federal Employee Retirement Income Security Act (ERISA) to incorporate a mandate for covered insureds diagnosed with ASD for coverage. Formally request the Texas federal congressional delegation to introduce legislation amending the federal Employee Retirement Income Security Act (ERISA) to incorporate a mandate for covered insureds diagnosed with ASD for coverage. 4.16LF Autism treatment is an applied skill. Creating fluency in applied skills requires ongoing coached/mentored training and this paradigm of training does not exist in the TEA/ESC/LEA model. Schools do not have to provide “treatment” - This is a medical term. Schools have to create equal access to educational opportunity. 4.17LF Medicaid currently does not reimburse autism treatment and is responsible for a significant percentage of children covered. The whole insurance industry follows Medicaid's example. The barrier is that until applied behavioral analysts are allowed to bill Medicaid for their services, the Medicaid population can not be properly served. And in order for that to happen, per our TAC, that group of individuals would have to fall into one of the following categories: * Be Medicare part B providers, which will not happen since they don't serve the standard Medicare population * Be called out as a provider in TAC- they currently aren't * Be licensed / certified by a State agency- they have national certification So, in all likelihood it will require enabling legislation to allow this group to be enrolled Medicaid providers. This also applies to Assistive Technology and Augmentative Alternative Communication (AAC) assessment and devices. 4.18LF Parents who are not educated as a treatment partner in a coached model will not develop the skills needed to participate in their child's treatment 4.18.1S: Develop parent training modules that are easily accessible. Utilize technology. this could be done by the TARC. 4.18.2S: Establish Statewide Autism Resources and Training (START) Grant. Use this to create training for parents. 4.19LF Parents who are not educated in advocating for their children will not be able to negotiate the systems they need to. 4.19.1S: Establish Statewide Autism Resources and Training (START) Grant and fund Parent Leadership Training. This can be done by a State disability organization, legislatively, or jointly by partnering with non-profits to bring person-centered first responder training to all needed agencies. It can either be mandated training or incentives can be provided by or to departments to attend the training. This includes judges, prosecutors, etc. 4.19.2S: Develop a statewide network of advocates with an agenda. 4.20LF Systems that are designed to serve these families often don't take into account the limited time and ability of parents. Complicated systems create limitations to access the existing service programs. 4.20.1S: Develop a “Family Navigation Guide” to assist families in locating resources throughout their child’s development. Should be posted on DAD’s web-site and downloaded free of charge by interested parties. Make hard copies available at MHMR centers or by special request. 4.20.2S: HHSC/DADS/DARS establish navigator/case manager services specifically trained for people with autism spectrum disorder. This could help identify, access and coordinate services across agencies throughout their lives. This is similar to an ombudsperson. 4.21LF Community and student perception of people with autism often results in reduced engagement opportunities which are critical for best path outcomes. 4.21.1S: Do disability orientation for general education students TEA unlikely to mandate this due to conflict with existing NCLB mandates. 4.22LF Lack of understanding of ASD within the law enforcement, judicial, and DFPS community can create situations where parents and people with autism are unjustly accused. This results in reduction of engagement opportunities, family breakup. This also results in individuals being shot for their symptomatology, being given outrageously unfair sentences, and being treated very poorly in general whether they are victims or the accused. 4.22.1S: Develop a first responder and an autism legal program. This can be done by a State disability organization, legislatively, or jointly by partnering with non-profits to bring person-centered first responder training to all needed agencies. It can be mandated or can be done by providing incentives by or to departments who attend. 4.22.2S: Local law enforcement agency grant established to develop and present trainings. 4.23LF Families of people with ASD often breakup or are under such stress that effective interventions cannot be delivered. This hurts financial opportunity as well as sibling engagement opportunity. 4.23.1S: Create Regional Autism Services Program to coordinate community-based services and support for individuals with autism and their families (including family counseling). This can be a collaborative interagency effort. 4.23.2S: Create an Autism Training and Technical Assistance Project devoted to implementing effective educational and other support services for children with autism. This can encourage parental involvement with their child’s education. Further, it could offer family counseling as one of its services. Families encounter much less stress when their child accesses appropriate services at school and in the community. 4.23.3S: Create an Office of Autism Services that will develop programs for children and adults and families with autism spectrum disorders. The office should also establish program standards and coordinate program capacity. The most logical place for this to occur is within DADS. This can include a counseling program for families if needed. 4.24LF Multilingual support is limited among treatment professionals resulting in limits to parent’s knowledge 4.24.1S: All documents distributed by DADS, TEA, DARS, Voc Rehab, etc. should have at least a Spanish translation. They should all be culturally sensitive documents. This can be done either by current agency employees who are bi- or multilingual or by contracting with university foreign language departments either as a fee-for-service or as a practicum opportunity for students. 4.24.2S: Active recruitment of bi-or multilingual professionals through incentive programs should occur. 4.25LF Different children with ASD may require different treatment approaches and not all treatment approaches are available in any given agency, school, or private setting. 4.25.1S: Establish regional Autism Centers of Excellence. These centers could house all treatment approaches under one roof. They could be collaborative efforts between different state agencies (TEA, DADS, etc.) and universities and/or hospitals or other 501(c)3 groups. 4.26LF Higher functioning children with ASD often do not qualify for special education but still have special needs in order to succeed in the least restrictive environment. All children with autism at any level should, at a minimum, qualify for a 504 plan. It is important for parents to understand their child's needs, strengths, and rights through special education and 504. 4.27LF Due to widespread failure many parents have lost trust in the professionals who deal with autism. 4.28LF Cultural norms and typical developmental benchmarks often mislead parents into pursuing treatment in areas that miss the big picture for overall future development. 4.28.1S: Develop culturally sensitive materials for the TARC to distribute that focus on long-term needs of ASD. DE 5: Adolescents and adults with ASD will build lives of distinction while working and living in the least restrictive settings of their choice. Every person has a distinct contribution to make in their life. The idea of dignified, purposeful living is one every human being should be an advocate for. The monetary advantages of transitioning individuals to meaningful employment rather than lifelong care should be something every policy maker can get behind. It is a false notion that individuals with ASD cannot be productive citizens and help to pay their way. If these two concepts are married in creative work life solutions Texas will have an increasing supply of legal, reliable workers to fulfill jobs while allowing each individual to make their distinctive contribution to the world. 5.1LF Lack of data to document need for services and supports for ASD adults When making legislative and other requests, most decision makers want to know how many people the change will affect. There is currently nothing to offer but ballpark estimates. 5.1.1S: TDH to complete epidemiology study in conjunction with CDC 5.1.2S: Creation of ASD registry 5.1.3S: MHMR, DD Council, or both conduct in-depth study on autism and service delivery in Texas using data and specific numbers 5.1.4S: Start requiring state agencies to collect and categorize data specific to autism (#'s served, etc.) 5.1.5S: DARS to conduct supported employment study breaking down #'s by diagnosis 5.2LF Transition education is not coordinated with the next agency responsible for that person DADS and DARS have been unresponsive to school district requests to attend ARD meetings. Many schools have given up and no longer even make requests. 5.2.1S: Develop transition binder and distribute to all students/agencies 5.2.2S: Legislative directive to state agencies (e.g. DADS, DARS, TEA) to develop joint plan for individuals with ASD across agencies and lifespan 5.3LF Supported employment services as they currently exist have not been creative in providing employment opportunities Training for agency personnel on how to work specifically with ASD individuals has not occurred. Person-centered planning is not occurring. Agencies are more concerned with what is written into a plan (on paper) than what actually happens. There are no outcome measures in place. 5.3.1S: Development of specific autism-related supported employment services within DARS 5.3.2S: Transition institute developed at university level with training given to necessary groups (DARS) 5.3.3S: TEA, DADS, DARS team created to develop seamless wraparound system with specific outcome measures 5.3.4S: Develop "Pathways to Employment" (based on Minnesota competitive employment systems - Medicaid infrastructure initiative) using grant funding 5.4LF Transition planning does not start early enough This is governed by federal legislation, which now puts the transition start at age 16. The state can, however, require more than the federal legislation requires. 5.4.1S: Enact legislation to start transition planning at age 14 in Texas 5.5LF There are long waiting lists to obtain services There are 22,000 individuals with a wide range of disabilities waiting to receive Medicaid waiver services. A related problem is that when waiver services are finally obtained after a long waiting period, waivers do not encompass the needs of entire autism population. Additionally, services are not quality. Also, service delivery is fragmented. 5.5.1S: Devise and implement an autism specific waiver 5.5.2S: Facets of HCS waiver and CLASS waiver combined for individuals with autism 5.5.3S: Amend all waivers to include ABA consultation 5.5.4S: Have one DD waiver that is geared toward individual needs, not diagnosis 5.6LF Community perception of people with autism often results in reduced or no engagement opportunities apart from the person's core family Many individuals still only know "Rain Man" version of autism. 5.6 LF1. Sub-problem: ASD adults at every functioning level lack self determination skills. Create a new program within current UCDD to develop and train on self- determination skills specific to autism or can create a "train the trainers" model 5.6 LF2. Sub-problem: Adults with ASD are unable to access needed AT/AAC in order to prove/improve competency. not available in a timely or equitable manner 5.6.LF2S: Establish assistive technology fund for assessment by certified personnel, training, and needed equipment (AAC) 5.6 LF3: Adults do not have access to AT professionals with expertise in ASD for assessment or service needs. 5.6.LF3S: Create AT/AAC master's programs at university level in some Texas universities with ultimate goal to become RESNA certified AT professional 5.7LF Existing accountability systems create pressure to adhere to existing higher education curriculum are creating failure and dropout in school while moving focus away from critical skills which are needed to live independently or work competitively Texas is bound by not only IDEA but also No Child Left Behind (NCLB), which requires adherence to very strict academic guidelines. This would require a federal legislative change to both IDEA and NCLB. 5.8LF Options for students needing additional support during college are extremely limited and non-existent in some places. Colleges and universities are not required to modify curriculum, only make minor accommodations. Although the Office of Civil Rights Educational Division oversees university accommodations, OCR rarely enforces this rule. Many universities do not force individual professors to make accommodations. Texas universities lack capacity to serve individuals with AS/HFA. 5.8.1S: Develop additional specialized university programs such as the one at Midwestern State in Wichita Falls and like the program at Eastern New Mexico University for individuals with varying levels of ASD 5.9LF Options for supported independent living arrangements for higher functioning people with ASD are very limited. The options that do exist are primarily geared toward lower functioning people. Beyond group homes for those ASD individuals who have a concurrent MR diagnosis, there are no independent living arrangements for adults with higher functioning ASD's. The current system of waivers only supports two options...totally dependent and totally independent. Limited supports are available. 5.9.1S: Partner with 501(c)3 groups who serve other adults with special housing needs Encourage them to get training and include autism specialty housing in their plans (e.g. Samaritan House in FW for AIDS patients) 5.9.2S: Persuade one or more Texas universities to develop assorted transitioning and housing opportunities through that university. This can provide opportunities for university students to get hands- on/internship for social work, nursing, special education, medical, and psychology students. 5.10LF Adults with autism do not have access to a resource familiar with ASD beyond the family who can inform and educate them about accessing the system Most parents don't even know how to access the system or even what systems exist that their child can access once they become adults. 5.10.1S: Require state agencies to have specific ASD-related training each year (DADS, DARS) at state and local/county level and henceforth all new employees of the agencies (DADS, DARS) at state and local/county level and henceforth for all new employees 5.10.2S: Persuade DD Council to fund parent systems training 5.11LF Lack of education in regards to physical development (Health, Wellness, Sexual Education) 5.11.LF1. Related problem: lack of ability for adults to access and pay for needed medical and psychological services 5.11.LF1S: Amend Medicaid to insure reimbursement for evidence-based medical treatment , behavioral and psychological assessments and interventions 5.12LF ASD individuals cannot negotiate maze of state systems to get help. Parents, when available, are often overlooked. 5.12.1S: Offer annual, comprehensive fair for families to provide guidance to system. Distribute CD's of fair for those unable to come. 5.12.2S: Create office of ombudsman to help families deal with impersonal service delivery system. Can be a single entity overall or one ombudsman within each agency. 5.13LF Options for 3rd party initiated social engagement opportunities in adults are limited 5.13.1S: Texas Parks and Wildlife Department to request and train municipal parks and recreation departments to expand capacity for local social and recreational activities for adults with ASD in the community across the lifespan 5.14LF Secondary level public schools do not take responsibility in the IEP process for training a child into a competitive vocation. NCLB requirements have made it almost impossible for all but the most impaired students to actually receive a REAL individualized education plan. DD Council states “Students with disabilities should receive a sound foundation in their public school education from which to transition to a career path after graduation. Secondary education must provide a range of choices in career preparation such as vocational skills, career and technology education, preparation for post secondary education and opportunities for employment in the community.” 5.15LF Lack of ability to gain diagnosis (or frequent misdiagnoses of MH/MI) for older individuals 5.15.1S: Capacity building project for older AS/AU diagnostics - make CME opportunities available 5.16LF Adults with AS (Asperger's) get little or no support. 5.16.1S: Develop and implement ASD pilot program for adults with autism and no co-morbid MR. 5.17LF Ensure emergency management/preparedness plans in the state address needs of individuals with ASD 5.17.1S: Require the Texas Division of Emergency Management Services to include in their disaster plan, provisions for evacuating and assisting individuals with ASD. The plan should address individual persons in state school facilities as well as persons with special needs that live within the community. 5.18LF There is no mandated, comprehensive training program for first responders regarding ASD. 5.18.1S: Develop or institute an already existing first responder training program such as LEAN On Us or Dennis Debbaudt's program This can be done by a State disability organization, legislatively, or jointly by partnering with non-profits to bring person-centered first responder training to all needed agencies. (LEAN On Us http://www.leanonus.org/ ) . 5.19LF MH portion of MHMR has no capacity to work with individuals with dual diagnosis of ASD/MH. 5.19.1S: MH recognizes and develops program and supports for dual diagnosis issues (i.e. modified cognitive behavior therapy, crisis intervention, etc.) 5.20LF Lack of available, affordable respite care for families of adults with autism 5.20.1S: Development of regional respite centers utilizing well-trained providers 5.21LF Lack of universally accessible crisis intervention/behavioral services staffed with well-trained professionals for adults with ASD. 5.21.1S: Creation of crisis centers with specific ASD and BCBA crisis staff and training. This could be created through MHMR or through county hospitals. 5.22LF Community colleges lack capacity to serve students with ASD across the spectrum, including AS and HFA individuals. 5.22.1S: Work with community college systems to create capacity to serve population. Emphases as a treatment for AS, HFA to access grant funds. Can also develop community inclusion activities, in-home supports, creative arts expression, and structured leisure activities at community college level for other ASD adults.
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