1 / 47

Autism Spectrum Disorders:

Thomas
Download Presentation

Autism Spectrum Disorders:

An Image/Link below is provided (as is) to download presentation Download Policy: Content on the Website is provided to you AS IS for your information and personal use and may not be sold / licensed / shared on other websites without getting consent from its author. Content is provided to you AS IS for your information and personal use only. Download presentation by click this link. While downloading, if for some reason you are not able to download a presentation, the publisher may have deleted the file from their server. During download, if you can't get a presentation, the file might be deleted by the publisher.

E N D

Presentation Transcript


    1. Autism Spectrum Disorders: Putting the Puzzle Together in Florida

    2. What is Autism Spectrum Disorder? Autism is a “lifelong neurological disability that affects a person’s ability to communicate, understand language play and socially interact with others.” Autism is classified as a developmental disability. May involve substantial core deficits in communication and social skills that greatly impact level of functioning. Affected individuals may experience lack of emotion, trouble with basic motor skills, repetitive behaviors or body movement, inability to regulate social interaction, impaired use of non-verbal behavior such as facial expression or eye gaze, and difficulty in language skills. CARD-USF Brochure – What is Autism See, e.g. DSM- IV and Indiana Resource Center for Autism, Introduction to Autism – Self Instruction Manual, 1992 These manifestations may severely affect social interactions, cognitive abilities, communication skills, emotional skills, motor skills, behavior and learning.CARD-USF Brochure – What is Autism See, e.g. DSM- IV and Indiana Resource Center for Autism, Introduction to Autism – Self Instruction Manual, 1992 These manifestations may severely affect social interactions, cognitive abilities, communication skills, emotional skills, motor skills, behavior and learning.

    3. What is Autism Spectrum Disorder? Individuals may have atypical responses to sensory stimulation and to objects or events. Generally, there are issues with intimacy, interactive and expressive communication, and meaningful word use. CARD-USF Brochure – What is Autism See, e.g. DSM- IV and Indiana Resource Center for Autism, Introduction to Autism – Self Instruction Manual, 1992 These manifestations may severely affect social interactions, cognitive abilities, communication skills, emotional skills, motor skills, behavior and learning.CARD-USF Brochure – What is Autism See, e.g. DSM- IV and Indiana Resource Center for Autism, Introduction to Autism – Self Instruction Manual, 1992 These manifestations may severely affect social interactions, cognitive abilities, communication skills, emotional skills, motor skills, behavior and learning.

    4. What are Autism Spectrum Disorders (ASDs)? Asperger’s Disorder Autistic Disorder Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS); includes atypical autism The Autism Spectrum Disorders fall under a grouping of 5 conditions known as Pervasive Developmental Disorders as defined in the most recent version of the Diagnostic and Statistics Manual (DSM-IV-TR). Some organizations list these 3 disorders as the Autism Spectrum Disorders (e.g. AAP – www.aap.org). However, some groups also consider Rhett’s Disorder and Childhood Disintegrative Disorder, the other 2 Pervasive Developmental Disorders, to be rarer forms of Autism Spectrum Disorders, or use the term “ASD” interchangeably with “PDD” (e.g. National Institutes of Health; National Institutes of Mental Health – http://www.nimh.nih.gov/health/topics/autism-spectrum-disorders-pervasive-developmental-disorders/index.shtml). Some people use “autism” as an umbrella term to refer to ASDs, while other people use the word “autism” to refer only to autistic disorder. The Autism Spectrum Disorders fall under a grouping of 5 conditions known as Pervasive Developmental Disorders as defined in the most recent version of the Diagnostic and Statistics Manual (DSM-IV-TR). Some organizations list these 3 disorders as the Autism Spectrum Disorders (e.g. AAP – www.aap.org). However, some groups also consider Rhett’s Disorder and Childhood Disintegrative Disorder, the other 2 Pervasive Developmental Disorders, to be rarer forms of Autism Spectrum Disorders, or use the term “ASD” interchangeably with “PDD” (e.g. National Institutes of Health; National Institutes of Mental Health – http://www.nimh.nih.gov/health/topics/autism-spectrum-disorders-pervasive-developmental-disorders/index.shtml). Some people use “autism” as an umbrella term to refer to ASDs, while other people use the word “autism” to refer only to autistic disorder.

    5. Who Is Affected by Autism Spectrum Disorders? All racial/ethnic backgrounds All socio-economic classes Across the world Four times more likely to occur in boys than in girls

    6. Is Autism New? Earliest recorded descriptions believed in the 18th century First identified as a specific disorder in 1943 by child psychiatrist Dr. Leo Kanner, a child psychologist at Johns Hopkins University Medical School. At about the same time, German scientist Dr. Hans Asperger, based on his study of 400 children, described another form of autism that became known as Asperger syndrome. The criteria used to diagnose ASDs have changed many times.

    7. Other Conditions Sometimes Faced by Persons with Autism Other developmental disabilites (e.g. mental retardation/intellectual impairment) Epilepsy Fragile X Syndrome; Prader-Willi Attention Deficit Sensory Integration issues Gastrointestinal disorders Depression/anxiety/sleep issues Children with ASDs may also have other developmental disabilities such as mental retardation (also called intellectual impairment), epilepsy,  fragile X syndrome or tuberous sclerosis. Some children may also have psychiatric disorders such as depression and anxiety. Some children may have attention deficits, sensory issues, sleep problems, and gastrointestinal disorders. http://www.cdc.gov/ncbddd/autism/faq_general.htmChildren with ASDs may also have other developmental disabilities such as mental retardation (also called intellectual impairment), epilepsy,  fragile X syndrome or tuberous sclerosis. Some children may also have psychiatric disorders such as depression and anxiety. Some children may have attention deficits, sensory issues, sleep problems, and gastrointestinal disorders. http://www.cdc.gov/ncbddd/autism/faq_general.htm

    8. Issues Faced by Persons with Autism Safety Communication Social Interaction Acceptance Diagnosis and Coverage Educational Opportunities Interpersonal Relationships Finances and Workforce

    9. Issues Faced by Caregivers of Persons with Autism Recognition Information Resources Support Coverage of Therapy Options Long-Term Planning Family Unit The financial, emotional, and mental impact to families is tremendous. It necessarily becomes the central focus of everyday existence, affecting everything from work productivity to finances. Some families may become isolated or avoid seeking support due to concerns regarding stigma. Families must consider significant adjustments to lifestyle, and the possibility of the loss of primary caretaker income or the cost of additional childcare. Often families have significant logistical and monetary difficulties coordinating all of the care that a child with ASD requires. Families must contend with issues of long term care, specialized estate planning, life insurance, health insurance, guardianship, community support, issues of employment, and dependent versus independent living. Wait lists for treatment programs, special schools or health care providers may leave families discouraged and affected individuals without necessary care. “Some children with autism cost $70,000-$80,000 a year to transport and educate. Estimates indicate Autistic children go to doctors three times more than normal children, and families can travel hundreds of miles to see a knowledgeable doctor. Helpful professional resources are scarce, leaving many families feeling isolated and alone with little to no support.” The financial, emotional, and mental impact to families is tremendous. It necessarily becomes the central focus of everyday existence, affecting everything from work productivity to finances. Some families may become isolated or avoid seeking support due to concerns regarding stigma. Families must consider significant adjustments to lifestyle, and the possibility of the loss of primary caretaker income or the cost of additional childcare. Often families have significant logistical and monetary difficulties coordinating all of the care that a child with ASD requires. Families must contend with issues of long term care, specialized estate planning, life insurance, health insurance, guardianship, community support, issues of employment, and dependent versus independent living. Wait lists for treatment programs, special schools or health care providers may leave families discouraged and affected individuals without necessary care. “Some children with autism cost $70,000-$80,000 a year to transport and educate. Estimates indicate Autistic children go to doctors three times more than normal children, and families can travel hundreds of miles to see a knowledgeable doctor. Helpful professional resources are scarce, leaving many families feeling isolated and alone with little to no support.”

    10. Causes of Autism Generally Unknown – May vary among individuals; may have multiple factors Scientists believe some genetic component Among identical twins, if one child has autism, then the other will be affected about 75% of the time. In non-identical twins, if one child has autism, then the other has it about 3% of the time. Parents who have a child with an ASD have a 2%–8% chance of having a second child who is also affected For most people with ASDs, the cause is not known. But ASDs tend to occur more often than expected among people who have certain other medical conditions, including Fragile X syndrome, tuberous sclerosis, congenital rubella syndrome, and untreated phenylketonuria (PKU). Some harmful drugs taken during pregnancy also have been linked with a higher risk of autism, specifically, the prescription drug thalidomide. Theories have varied over the years and have included genetic mutation; genetic predispositon/triggers, lack of sufficient interpersonal contact in infancy and early childhood, environmental factors, exposure to heavy metals, medication use during pregnancy (e.g. thalidomide, terbutaline) and diet.For most people with ASDs, the cause is not known. But ASDs tend to occur more often than expected among people who have certain other medical conditions, including Fragile X syndrome, tuberous sclerosis, congenital rubella syndrome, and untreated phenylketonuria (PKU). Some harmful drugs taken during pregnancy also have been linked with a higher risk of autism, specifically, the prescription drug thalidomide. Theories have varied over the years and have included genetic mutation; genetic predispositon/triggers, lack of sufficient interpersonal contact in infancy and early childhood, environmental factors, exposure to heavy metals, medication use during pregnancy (e.g. thalidomide, terbutaline) and diet.

    11. Cures for Autism Theories No confirmed cures

    12. Prevalence – United States Estimated at 1 in 150 (Based on CDC Autism and Developmental Disabilities Monitoring Network data released in 2007 – multiple areas) Rates may be higher or lower in other areas (@ 1 in 300 in AL; @ 1 in 95 in NJ) If 4 million children born in the U.S. per year, estimated up to 560,000 individuals between the ages of 0 to 21 have an ASD  What is the prevalence of autism? CDC’s Autism and Developmental Disabilities Monitoring (ADDM) Network released data in 2007 that found about 1 in 150 8-year-old children in multiple areas of the United States had an ASD. Since the ADDM sites do not represent a nationally representative sample, the prevalence estimates should not be generalized to every community in the United States. Although accurate for the areas we studied, rates may be higher or lower in other areas. However, these prevalence estimates can help communities project how many children may have autism for planning and identification purposes. They can also be used to provide for more appropriate interventions for children with ASDs. What do the ADDM network results tell us about the prevalence of ASD in the United States? Results from CDC’s ADDM network showed the average ASD prevalence among states participating in the project was 6.7 per 1,000 children in 2000 (6 sites) and 6.6 per 1,000 in 2002 (14 sites), or approximately 1in 150 children. Most sites identified between 5.2—7.6 per 1,000 8-year-old children with ASD in 2000 and 2002. There was some variation with ASD prevalence significantly lower in 1 site (3.3 in AL) and higher in 1 site (10.6 in NJ).  Prevalence was stable from 2000 to 2002 in 4 of the 6 sites that participated in both surveillance years, but increased slightly in GA and significantly in WV, indicating the need for ongoing monitoring of prevalence over time.  These data provide important information on the prevalence of ASD in areas of the United States and will be used to examine trends in the occurrence of these disabilities over time. What did we know about the prevalence of Autism Spectrum Disorders (ASDs) before ADDM? For decades, autism was believed to occur in 4 to 5 per 10,000 children. In 2004, CDC partnered with the American Academy of Pediatrics (AAP) to issue an Autism A.L.A.R.M.[1] At that time, Data from several studies that used the current criteria for diagnosing ASDs (DSM-IV and ICD-10) found prevalence rates for ASDs between 2 and 6 per 1,000 children. Therefore, it was summarized that up to 1 in 166 children (6/1,000) have an ASD.  While the 1in166 indicated the average upper estimate, there have been studies that have found as many as 12 in 1,000 children with an ASD in Europe and Scandinavia.  Studies conducted specifically in the United States have found rates between 2 to 7 per 1,000 children in the past decade. How many children in the United States have an ASD? There is not a full population count of all individuals with an ASD in the United States.  However, using the prevalence data stated above, we can estimate that if 4 million children are born in the United States every year and assuming the prevalence rate has been constant over the past two decades, we can estimate that up to 560,000 individuals between the ages of 0 to 21 have an ASD.  However, many of these individuals may not be classified as having an ASD until school-age or later.  Since behaviors related to the ASDs are usually present before the age of 3 years, it is important to make sure the individuals are being identified and are receiving appropriate intervention services as early as possible.What is the prevalence of autism?CDC’s Autism and Developmental Disabilities Monitoring (ADDM) Network released data in 2007 that found about 1 in 150 8-year-old children in multiple areas of the United States had an ASD.

    13. Prevalence - Florida Currently Unknown Florida is one of 11 states currently being monitored by the CDC’s Autism and Developmental Disabilities Monitoring Network ADDM Network:  Autism and Developmental Disabilities Monitoring Network CDC funds ten ADDM Network projects.  These projects are developing or improving programs to track the number of children with ASDs in their states.  The goal of the ADDM Network is to provide comparable, population-based estimates of the prevalence rates of autism and related disorders in different sites over time. The following states are part of the ADDM Network.  Please click on a state to learn more about its ASD monitoring activities. ADDM Network Alabama (PDF), Arizona (PDF), Colorado (PDF), Florida (PDF), Georgia/CDC (PDF), Maryland (PDF), Missouri (PDF), North Carolina (PDF), Pennsylvania (PDF), South Carolina (PDF), Wisconsin (PDF)ADDM Network:  Autism and Developmental Disabilities Monitoring NetworkCDC funds ten ADDM Network projects.  These projects are developing or improving programs to track the number of children with ASDs in their states.  The goal of the ADDM Network is to provide comparable, population-based estimates of the prevalence rates of autism and related disorders in different sites over time. The following states are part of the ADDM Network.  Please click on a state to learn more about its ASD monitoring activities. ADDM Network Alabama (PDF), Arizona (PDF), Colorado (PDF), Florida (PDF), Georgia/CDC (PDF), Maryland (PDF), Missouri (PDF), North Carolina (PDF), Pennsylvania (PDF), South Carolina (PDF), Wisconsin (PDF)

    14. The Cost of Autism A 2006 report by Harvard faculty (Ganz) estimates that it costs approximately $3.2 million to care for an autistic person over his lifetime. The study examined direct medical costs such as physician and outpatients services, prescription medication, behavioral therapies (average cost of more than $29,000 per person per year), and direct non-medical costs, such as special education and child care (annual cost of $38,000-$43,000 or more depending on level of disability). Harvard School of Public Health, Press Release (25 Apr 2006) Autism Has High Cost to Society <http://www.hsph.harvard.edu/press/releases/press04252006.html> Harvard School of Public Health, Press Release (25 Apr 2006) Autism Has High Cost to Society <http://www.hsph.harvard.edu/press/releases/press04252006.html>

    15. The Cost of Autism The study estimated indirect costs, based on the value of lost productivity, for autistic individuals and their parents from $39,000 to $130,000 annually. Indirect costs encompasses measures such as the difference in potential income between someone with autism and someone without and the loss of parental income due to reduced work hours or not working altogether. [This would suggest that the annual per person cost of care, including direct and indirect costs, averages more than $150,000.] Harvard School of Public Health, Press Release (25 Apr 2006) Autism Has High Cost to Society <http://www.hsph.harvard.edu/press/releases/press04252006.html> Harvard School of Public Health, Press Release (25 Apr 2006) Autism Has High Cost to Society <http://www.hsph.harvard.edu/press/releases/press04252006.html>

    16. Impact to the National Economy In 2003, the Autism Society of America described the then annual cost of autism on the U.S. Economy to be $90 billion. An analysis of future cost based the current estimated rate of increase of 10%-17% annual growth in the prevalence of autism, leads to projected annual costs of $200 to $400 billion by 2013.

    17. Impact to Florida’s Economy Full impact unknown Lost productivity (caregivers) Loss of workforce As caregivers age, responsibility may fall to the State

    18. Impact to Florida’s Families Potential isolation Challenge in accessing resources Out of pocket costs/finances Insurance Siblings Divorce rate Many sources quote an autism divorce rate of 80%, however supporting data for that number is missing. The National Autism Association has launched a program to combat divorce rates in the autism community and is looking to ‘confirm or update’ that percentage before using it in its program materials. Many sources quote an autism divorce rate of 80%, however supporting data for that number is missing. The National Autism Association has launched a program to combat divorce rates in the autism community and is looking to ‘confirm or update’ that percentage before using it in its program materials.

    19. Early Intervention for Cost Savings Some studies suggest that costs of lifelong care can be reduced significantly with early diagnosis and intervention. At least one study reports that early intervention can save up to $2.5 million per individual in costs of care over a lifetime. (Cambridge Center for Behavioral Analysis, 1998). Autism Society of America. Cambridge Center for Behavioral Analysis. Summary: Cost-Benefit Estimates for Early Intensive Behavioral Intervention for Young Children with Autism. Jacobson, JW, Mulick JA, Green, G. Behavioral Interventions, 1998, Volume 13, 201-226. Autism Society of America. Cambridge Center for Behavioral Analysis. Summary: Cost-Benefit Estimates for Early Intensive Behavioral Intervention for Young Children with Autism. Jacobson, JW, Mulick JA, Green, G. Behavioral Interventions, 1998, Volume 13, 201-226.

    20. Early Screening & AAP Screening at 18 and 24 months (AAP-2007) Various screening tools (e.g. M-CHAT)

    21. Additional Opportunities for Early Recognition Health care provider Early childcare Educators Families, friends

    22. Treatments for Autism Must be individually tailored Behavioral Therapy “Core Deficit” /Social Skill Therapy Speech therapy, occupational therapy physical therapy, audiology/speech language pathology, psychological counseling, special/private schooling, prescription medications

    23. Other Theories/Treatments Diet Casein Gluten Chelation Audiological Therapy

    24. Other Treatments Being Explored As symptoms and comorbid conditions vary, treatments and therapies must be tailored to the particular individual with PDD/ASD to achieve efficacy. Various medications have been utilized in an effort to control or lessen the manifestations of ASDs. Among medications being used or researched are tranquilizers, antipsychotics, Risperdol and recently, Namenda (memantine), used in the treatment of Alzheimer’s to alter/restore brain connections. http://www.newscientist.com/article.ns?id=dn3586; Cure Autism Now, Clinical Trials Network study with memantine. http://www.newscientist.com/article.ns?id=dn3586; Cure Autism Now, Clinical Trials Network study with memantine.

    25. Applied Behavioral Analysis Psychologist B.F. Skinner developed a theory known as Applied Behavior Analysis, or ABA, which seeks to alter behavior through the repetition and reinforcement of desired behaviors. Researchers have applied Skinner’s principles to therapies with autistic individuals. ABA may be the most widely known therapy for individuals with ASDs. Despite substantial benefits from ABA, follow-up studies have questioned whether ABA leads to any improvement in social behavioral skills, which are necessary for the individual to fully integrate into society.[ii] [i] Ivar Lovaas at UCLA (1987 study). [ii] Tristam Smith (protégé of Lovaas – 2000 study). Despite substantial benefits from ABA, follow-up studies have questioned whether ABA leads to any improvement in social behavioral skills, which are necessary for the individual to fully integrate into society.[ii]

    26. Applied Behavioral Analysis ABA has demonstrated efficacy in “managing problem and aberrant behavior such as self-injurious, ritualistic, repetitive, aggressive and disruptive behavior, it does this through teaching alternative pro-social behavior.” Successful early intervention programs often include ABA components. There is a high demand for behavior analysts. In Florida, behavioral analysts must meet certain statutory requirements. Despite substantial benefits from ABA, follow-up studies have questioned whether ABA leads to any improvement in social behavioral skills, which are necessary for the individual to fully integrate into society.[ii] [i] Ivar Lovaas at UCLA (1987 study). [ii] Tristam Smith (protégé of Lovaas – 2000 study). Despite substantial benefits from ABA, follow-up studies have questioned whether ABA leads to any improvement in social behavioral skills, which are necessary for the individual to fully integrate into society.[ii]

    27. RDI Relationship Development Intervention (RDI) is a program developed by Steven Gutstein that emphasizes Experience Sharing rather than the training of behavioral responses to specific situations. RDI activities address core deficits of autism related conditions by teaching Dynamic Intelligence through flexibility and adaptability in social situations. This enables increased quality of life through the development of meaningful relationships often unattainable for persons with autism spectrum disorders. May lead to “dramatic changes in flexible thinking, pragmatic communication, creative information processing and self-development.” [i] RDI Connections Center, Frequently Asked Questions, http://www.rdiconnect.com/RDI/FAQ_General.asp.

    28. RDI Curriculum is comprised of six levels and 24 stages designed to teach individuals how to build and internalize relationship skills essential to social and emotional development. Uses comprehensive assessment tools, books, workshops, interviews, and videotaped sessions with RDI certified consultant feedback to help individuals progress through the program. The Relationship Development Assessment tool can be used to formulate measurable social developmental goals in a school setting as part of a child’s individualized education program (IEP). [i] RDI Connections Center, Frequently Asked Questions, http://www.rdiconnect.com/RDI/FAQ_General.asp.

    29. Insurance Coverage Pre-existing condition Requirement for improvement (time period) Diagnosis/terminology Services not included Denial of coverage

    30. Medicaid Waivers Medicaid waivers address additional services not otherwise covered by traditional Medicaid and seek to avoid duplication of services. 1) Family and Supported Living (FSL) Waiver provides home and community based services to eligible children and adults with developmental disabilities. Capped. 2) Developmental Disabilities Home and Community-Based Services (DD/HCBS) Waiver provides home and community-based supports and services to eligible persons with developmental disabilities. The HCBS Waiver offers services without dollar cap limits. Medicaid waivers address additional services not otherwise covered by traditional Medicaid and seek to avoid duplication of services. For example, the waivers do not cover primary care or prescription drugs as they are already covered under Medicaid.[i] Diagnosis does not necessarily make people eligible, as there is an adaptive component and the individual must be significantly affected in multiple life areas. 1)Family and Supported Living (FSL) Waiver[ii] The Family and Supported Living Waiver (FSL) Waiver provides home and community based services to eligible children and adults with developmental disabilities. This waiver began in July 2004 and is specifically designed for individuals who choose to live in their own home, family home or in a supported living situation. The total annual budget per person may not exceed $14,282. The FSL waiver currently provides for services that include: adult day training, consumable medical supplies, environmental accessibility adaptations, in-home support, personal emergency response system, respite services, support coordination, supported employment, supported living coaching, transportation, and behavioral services. As the FSL waiver is capped, the Task Force may look to expand services within the FSL to better gauge the resulting costs to the state if more individuals are eligible for care. As studies have shown, early intervention saves millions in costs to families and the state over an individual’s lifetime. 2) Developmental Disabilities Home and Community-Based Services (DD/HCBS) Waiver The Home and Community Based Services Waiver (HCBS Waiver) provides home and community-based supports and services to eligible persons with developmental disabilities. The HCBS Waiver offers services without dollar cap limits. The Legislature has set specific criteria to receive services. Some relevant services include: support coordination, speech, hearing or language therapy, occupational therapy, physical therapy, respiratory therapy, specialized mental health services, behavior analysis services (include the analysis, development, modification and monitoring of behavior analysis service plans for the purpose of changing an individual’s behavior), behavior assistant services (include the performance of one-on-one activities related to the delivery of behavior services, based on established behavior plan, supervised by a behavior analyst and approved by the local behavioral peer review committee), nursing services, supported employment services, and adult day training services. [i] See, e.g., What Do I Need and How Do I Get It? (2003). Florida Developmental Disabilities Council, Inc. [ii] Agency for Persons with Disabilities < http://apd.myflorida.com/2005-sc-handout-programs.htm#home-waiver>; see also MyFlorida.com Frequently Asked Questions.Medicaid waivers address additional services not otherwise covered by traditional Medicaid and seek to avoid duplication of services. For example, the waivers do not cover primary care or prescription drugs as they are already covered under Medicaid.[i] Diagnosis does not necessarily make people eligible, as there is an adaptive component and the individual must be significantly affected in multiple life areas. 1)Family and Supported Living (FSL) Waiver[ii] The Family and Supported Living Waiver (FSL) Waiver provides home and community based services to eligible children and adults with developmental disabilities. This waiver began in July 2004 and is specifically designed for individuals who choose to live in their own home, family home or in a supported living situation. The total annual budget per person may not exceed $14,282. The FSL waiver currently provides for services that include: adult day training, consumable medical supplies, environmental accessibility adaptations, in-home support, personal emergency response system, respite services, support coordination, supported employment, supported living coaching, transportation, and behavioral services. As the FSL waiver is capped, the Task Force may look to expand services within the FSL to better gauge the resulting costs to the state if more individuals are eligible for care. As studies have shown, early intervention saves millions in costs to families and the state over an individual’s lifetime. 2) Developmental Disabilities Home and Community-Based Services (DD/HCBS) Waiver The Home and Community Based Services Waiver (HCBS Waiver) provides home and community-based supports and services to eligible persons with developmental disabilities. The HCBS Waiver offers services without dollar cap limits. The Legislature has set specific criteria to receive services. Some relevant services include: support coordination, speech, hearing or language therapy, occupational therapy, physical therapy, respiratory therapy, specialized mental health services, behavior analysis services (include the analysis, development, modification and monitoring of behavior analysis service plans for the purpose of changing an individual’s behavior), behavior assistant services (include the performance of one-on-one activities related to the delivery of behavior services, based on established behavior plan, supervised by a behavior analyst and approved by the local behavioral peer review committee), nursing services, supported employment services, and adult day training services.

    31. DIR/Floortime DIR/Floortime, developed by Dr. Stanley Greenspan, is an approach to autism and ASDs that is based on an assumption that the core developmental foundations for thinking, communicating and relating can be positively impacted. The DIR model allows for the incorporation of behavioral approaches in a dynamic and individualized way based on the needs of the child. DIR stands for “developmental, individual-difference, relationship based.”

    32. DIR/Floortime Floortime is a component of a comprehensive DIR intervention program that focuses on creating “emotionally meaningful learning interactions that encourage [] six basic developmental capacities.” Other DIR program components could involve speech therapy, peer play, occupational therapy, and use in the school environment. DIR is believed to help children with ASD learn to relate to others with warmth and intimacy, engage in meaningful communication with emotional gestures and words, and utilize high levels of empathy and abstract reasoning in thought.

    33. Other Treatments Being Explored As symptoms and co-occuring conditions vary, treatments and therapies must be tailored to the particular individual with PDD/ASD to achieve efficacy. Various medications have been utilized in an effort to control or lessen the manifestations of ASDs. Among medications being used or researched are tranquilizers, antipsychotics, Risperdol and recently, Namenda (memantine), used in the treatment of Alzheimer’s to alter/restore brain connections. http://www.newscientist.com/article.ns?id=dn3586; Cure Autism Now, Clinical Trials Network study with memantine. http://www.newscientist.com/article.ns?id=dn3586; Cure Autism Now, Clinical Trials Network study with memantine.

    34. Costs of and Payments for Treatment - Examples RDI spokesperson (Rachelle K. Sheely, PhD) has estimated that RDI treatment with a full time therapist should cost about $10,000 to $20,000 per year. Private speech therapy costs about $100-$200 per hour. Auditory Integration Training costs about $1,000. Auditory - and is only meant to address hypersensitivity to sounds. Its effectiveness is unproven according to the American Speech-Language-Hearing Association, the Academy of Audiology, and the American Academy of Pediatrics. Fast ForWord is a CD-ROM program that trains children in language basics over 4-8 weeks. Its efficacy for the treatment of autism is unknown. It costs $1,200-$1,600. (http://www.etsu.edu/cpah/commdis/AutismSociety/TreatIssApp/FastForward.asp) Auditory - and is only meant to address hypersensitivity to sounds. Its effectiveness is unproven according to the American Speech-Language-Hearing Association, the Academy of Audiology, and the American Academy of Pediatrics. Fast ForWord is a CD-ROM program that trains children in language basics over 4-8 weeks. Its efficacy for the treatment of autism is unknown. It costs $1,200-$1,600. (http://www.etsu.edu/cpah/commdis/AutismSociety/TreatIssApp/FastForward.asp)

    35. In the News: MMR Vaccine & Thimerosal A recent case (Polling) that was awarded compensation through the federal Vaccine Injury Compensation Program involved a child with a mitochondrial disorder or mitochondrial disease. This case has raised questions about what environmental triggers might bring on or worsen autism-like symptoms in children with such disorders. (American Academy of Pediatrics) http://www.aap.org/healthtopics/Autism.cfm Facts for Parents About Autism and Vaccine Safety from the American Academy of Pediatrics http://www.aap.org/healthtopics/Autism.cfm Facts for Parents About Autism and Vaccine Safetyfrom the American Academy of Pediatrics

    36. In the News: MMR Vaccine & Thimerosal According to the Centers for Disease Control and Prevention (CDC), this was a unique case and … does not change the immunization recommendations for children in whom vaccines are otherwise recommended.  More information is available at the CDC Web site: www.cdc.gov. (American Academy of Pediatrics Fact Sheet) http://www.aap.org/healthtopics/Autism.cfm Facts for Parents About Autism and Vaccine Safety from the American Academy of Pediatrics Although details of the case and the decision cannot be disclosed by the U.S. Department of Health and Human Services, the agency published a statement on March 3, 2008, which said: “HRSA (the Health Resources and Services Administration) has reviewed the scientific information concerning the allegation that vaccines cause autism and has found no credible evidence to support the claim.” (American Academy of Pediatrics Fact Sheet). http://www.aap.org/healthtopics/Autism.cfm Facts for Parents About Autism and Vaccine Safetyfrom the American Academy of Pediatrics Although details of the case and the decision cannot be disclosed by the U.S. Department of Health and Human Services, the agency published a statement on March 3, 2008, which said: “HRSA (the Health Resources and Services Administration) has reviewed the scientific information concerning the allegation that vaccines cause autism and has found no credible evidence to support the claim.” (American Academy of Pediatrics Fact Sheet).

    37. Educational Options for Persons with Autism Public School Private Schools Home School Schools of Autism

    38. Employment for Persons with Autism – Varied Reports Only 10 percent of affected individuals are able to obtain/maintain employment. Only 5 percent of affected individuals are able to marry or have a family. (Gutstein) A study of work outcomes in an 8 year program of a work support for adults with autism and IQs over 60 was able to find jobs for 68%, mostly clerical or administrative. In comparison only about 25% of the sample without support found jobs, mostly less satisfying or lower paid. Of the supported placements, more than 50% were permanent and none of the employees have been dismissed. (Autism. 2005). Grants for businesses hiring autistic individuals (e.g. Able Trust to I Can Grow, Inc., Cottondale, FL) Howlin, Patricia, Alcock J., and Burkin, C. “An 8 year follow-up of a specialist supported employment service for high-ability adults with autism or Asperger syndrome.” Autism. Vol. 9 No. 5, 2005: SAGE Publications, The National Autistic Society. Located in Cottondale, just 50 miles North of Panama City, Florida, I Can Grow, Inc., is a unique agriculture and vocational training program that provides employment opportunities and skills for the developmentally disabled. Students learn valuable skills through the process of hands-on Agricultural Experience. Students build self confidence and critical social skills that carry on throughout their lifetime. By providing a patient and friendly atmosphere students learn how to grow, cultivate and harvest vegetables and produce. giving them an important sense of self purpose and respect for nature. By participating in fundamental activities that involve planting, cultivating, and nurturing plants from the very beginning, the individual grows inside. This is reflected by their ambition to seek employment with an important sense of self purpose. The Program Provides Education and Employment by : Learning Through Growing School Incentive Programs Earning while Learning Work Incentive Programs Social Inclusion Activities Post Secondary Job Skills Promoting Self Sufficiency Establish Permanent Jobs Learning to Create Choices Promoting Positive Thinking Howlin, Patricia, Alcock J., and Burkin, C. “An 8 year follow-up of a specialist supported employment service for high-ability adults with autism or Asperger syndrome.” Autism. Vol. 9 No. 5, 2005: SAGE Publications, The National Autistic Society. Located in Cottondale, just 50 miles North of Panama City, Florida, I Can Grow, Inc., is a unique agriculture and vocational training program that provides employment opportunities and skills for the developmentally disabled.

    39. Federal Level and Other States - A Few Examples New Jersey – 2007, Governor Jon Corzine signs into law a 7 bill autism package South Carolina passed a law requiring coverage for treatment for autism Combating Autism Act Disabilities/Financial Savings Account bills (Crenshaw, Casey-Hatch, Dodd) Combating Autism Act[i] bill, which “reauthorizes and builds upon the provisions of the Children’s Health Act of 2000 and would authorize more that $1 billion in federal funds over five years to combat autism through research, screening, intervention and education. It reauthorizes the National Institutes of Health Center of Excellence for Autism program originally created in 2000, doubling the number of authorized centers.”[1] [1] Cure Autism Now, Advances, Spring 2006 newsletter, p. 24. [i] Senate bill S.843 and House bill HR.2421 Combating Autism Act[i] bill, which “reauthorizes and builds upon the provisions of the Children’s Health Act of 2000 and would authorize more that $1 billion in federal funds over five years to combat autism through research, screening, intervention and education. It reauthorizes the National Institutes of Health Center of Excellence for Autism program originally created in 2000, doubling the number of authorized centers.”[1]

    40. Key Resources in Florida State Agencies Centers for Autism and Related Disabilities (FSU-grant); Developmental Disabilities Council Organizations such as Autism Speaks (Cure Autism Now merged with Autism Speaks); Autism Society of America/Florida; Family Network on Disabilities Florida Developmental Disabilities Council [http://www.fddc.org/]: The Florida Developmental Disabilities Council[ii] is a private, non-profit organization that receives federal funding. It is currently engaged in an Autism Project to study the needs of Florida families and to seek solutions. CARD: The Center for Autism and Related Disorders (CARD) [iii] is a Florida state-funded program that provides services free of charge. CARD has been operational since 1993. There are currently 7 CARD sites housed at universities, some with satellites to better service the various counties in their designated regions: USF-CARD, University of Florida, Gainesville-CARD, University of Florida, Jacksonville-CARD, University of Miami-CARD, University of Central Florida-CARD, Florida Atlantic University-CARD, and Florida State University-CARD. CARD targets children and adults who have been diagnosed with autism spectrum disorder, autistic-like disability, dual sensory impairment, or sensory impairment with other disabilities. CARD’s mission is to enhance the lives of the individuals served by helping them become valued members of the community. CARD believes in building opportunities through collaboration with providers, schools and citizens. CARD collaborates, consults and trains with other agencies and systems to enhance their services without duplicating what they do. The CARD program provides direct assistance to individuals and families, consultation/technical assistance, education and training for teachers and professionals, and public education/awareness presentations/publications. In the 2006 Florida legislative session, the overall CARD program received a $2.3 million increase (less than half requested). Given the number of people affected by autism related disabilities (1 in 166 children born today are diagnosed), more funding is still needed. Centers of Excellence: The University of South Florida and the University of Miami have been designated National Centers of Excellence in developmental disabilities. Family Café/Governor’s Summit: For the past 8 years, an annual conference known as Family Café/Governor’s Summit has been held in Orlando for individuals with disabilities and their families. Registration had grown to 10,000. While the conference was intended to address all disabilities, a growing number of attendees are there for developmental disabilities. At the summit, the Governor introduces the heads of various state departments. A separate conference should be held specifically to address autism spectrum disorders. Such a conference could gather families (at no/minimal cost like the family café) and representatives from all of the governmental, non-profit and private organizations (could charge a cost that would go into funding for the program or services) to address this growing health concern.Florida Developmental Disabilities Council [http://www.fddc.org/]: The Florida Developmental Disabilities Council[ii] is a private, non-profit organization that receives federal funding. It is currently engaged in an Autism Project to study the needs of Florida families and to seek solutions. CARD: The Center for Autism and Related Disorders (CARD) [iii] is a Florida state-funded program that provides services free of charge. CARD has been operational since 1993. There are currently 7 CARD sites housed at universities, some with satellites to better service the various counties in their designated regions: USF-CARD, University of Florida, Gainesville-CARD, University of Florida, Jacksonville-CARD, University of Miami-CARD, University of Central Florida-CARD, Florida Atlantic University-CARD, and Florida State University-CARD. CARD targets children and adults who have been diagnosed with autism spectrum disorder, autistic-like disability, dual sensory impairment, or sensory impairment with other disabilities. CARD’s mission is to enhance the lives of the individuals served by helping them become valued members of the community. CARD believes in building opportunities through collaboration with providers, schools and citizens. CARD collaborates, consults and trains with other agencies and systems to enhance their services without duplicating what they do. The CARD program provides direct assistance to individuals and families, consultation/technical assistance, education and training for teachers and professionals, and public education/awareness presentations/publications. In the 2006 Florida legislative session, the overall CARD program received a $2.3 million increase (less than half requested). Given the number of people affected by autism related disabilities (1 in 166 children born today are diagnosed), more funding is still needed. Centers of Excellence: The University of South Florida and the University of Miami have been designated National Centers of Excellence in developmental disabilities. Family Café/Governor’s Summit: For the past 8 years, an annual conference known as Family Café/Governor’s Summit has been held in Orlando for individuals with disabilities and their families. Registration had grown to 10,000. While the conference was intended to address all disabilities, a growing number of attendees are there for developmental disabilities. At the summit, the Governor introduces the heads of various state departments. A separate conference should be held specifically to address autism spectrum disorders. Such a conference could gather families (at no/minimal cost like the family café) and representatives from all of the governmental, non-profit and private organizations (could charge a cost that would go into funding for the program or services) to address this growing health concern.

    41. State Agencies DOH/CMS – Early Steps/Florida’s Early Intervention Program (IDEA Part C) Agency for Person with Disabilities Children and Families Department of Education At the state level, numerous agencies such as DCF, APD, DOH and DOE may be involved in addressing specific components of the needs of individuals with ASDs. For example, children’s medical services may fall under DOH, Medicaid waivers under APD, mental health under DCF, CARD or IEPs under DOE. Families may feel that there is a need for interagency coordination and a source for navigating the system. An individual may be eligible for assistance through one agency but not another. Lack of interagency communication and coordination of care may leave impaired individuals who have PDDs such as Asperger’s without care through being shuffled in the system, denied by various agencies, or ineligible for/unable to collect Medicaid reimbursement. Coordination would fix significant gaps in the system. It may be helpful to fund a study within the state that better tracks the true costs per individual. The study would access data sets from various areas (e.g. IEP, social security). Agency for Persons with Disabilities: The Developmental Disability program in the Department of Children and Family Services (DCF) was transferred in 2004 by the Legislature to the Agency for Persons with Disabilities, a newly-created state agency. The Agency serves persons with developmental disabilities and their families. “Developmental disabilities” as defined by statute include mental retardation, autism, spina bifida, cerebral palsy, and Prader-Willi syndrome. [i] [i] Agency for Persons with Disabilities, State of Florida, Office of Legislative Affairs, 2006 Session Legislative Substantive Wrap-Up Report < http://apd.myflorida.com/docs/2006-Substantive-Wrap-up-Website.pdf>. [ii] See ________. See also Florida Statute 393.002  Transfer of Florida Developmental Disabilities Council as formerly created in this chapter to private nonprofit corporation. [iii] Fla. Stat. 1004.55. See also Chapter 393 Developmental Disabilities in Public Health Chapter; Fla. Stat. 393.063, Definitions.At the state level, numerous agencies such as DCF, APD, DOH and DOE may be involved in addressing specific components of the needs of individuals with ASDs. For example, children’s medical services may fall under DOH, Medicaid waivers under APD, mental health under DCF, CARD or IEPs under DOE. Families may feel that there is a need for interagency coordination and a source for navigating the system. An individual may be eligible for assistance through one agency but not another. Lack of interagency communication and coordination of care may leave impaired individuals who have PDDs such as Asperger’s without care through being shuffled in the system, denied by various agencies, or ineligible for/unable to collect Medicaid reimbursement. Coordination would fix significant gaps in the system. It may be helpful to fund a study within the state that better tracks the true costs per individual. The study would access data sets from various areas (e.g. IEP, social security). Agency for Persons with Disabilities: The Developmental Disability program in the Department of Children and Family Services (DCF) was transferred in 2004 by the Legislature to the Agency for Persons with Disabilities, a newly-created state agency. The Agency serves persons with developmental disabilities and their families. “Developmental disabilities” as defined by statute include mental retardation, autism, spina bifida, cerebral palsy, and Prader-Willi syndrome. [i][i] Agency for Persons with Disabilities, State of Florida, Office of Legislative Affairs, 2006 Session Legislative Substantive Wrap-Up Report < http://apd.myflorida.com/docs/2006-Substantive-Wrap-up-Website.pdf>. [ii] See ________. See also Florida Statute 393.002  Transfer of Florida Developmental Disabilities Council as formerly created in this chapter to private nonprofit corporation. [iii] Fla. Stat. 1004.55. See also Chapter 393 Developmental Disabilities in Public Health Chapter; Fla. Stat. 393.063, Definitions.

    42. Celebrity Advocates/Parents Dan Marino Doug Flutie Jenny McCarthy Rodney and Holly Robinson Peete Five for Fighting Foundations Whatkindofworlddoyouwant.comFoundations Whatkindofworlddoyouwant.com

    43. Steps Florida May Consider Taking Governor Charlie Crist - Florida Task Force on Autism Spectrum Disorders to coordinate efforts and to set a proactive agenda Task Force will: Establish a proactive and unified agenda for addressing autism in Florida. Coordinate and review the efforts of state agencies and organizations. Encourage public-private partnerships and resource sharing in support of autism and developmental disabilities research and services. Develop a comprehensive Florida autism website to help families sort through an extensive amount of information and quickly identify resources. Develop a strategy for early diagnosis and intervention by working with the medical experts and organizations to determine how best to encourage brief screenings for autism as part of routine pediatric visits. Studies suggest that early diagnosis and intervention of autism may significantly reduce the high costs of care per person over a lifetime. Task Force will: Establish a proactive and unified agenda for addressing autism in Florida. Coordinate and review the efforts of state agencies and organizations. Encourage public-private partnerships and resource sharing in support of autism and developmental disabilities research and services. Develop a comprehensive Florida autism website to help families sort through an extensive amount of information and quickly identify resources. Develop a strategy for early diagnosis and intervention by working with the medical experts and organizations to determine how best to encourage brief screenings for autism as part of routine pediatric visits. Studies suggest that early diagnosis and intervention of autism may significantly reduce the high costs of care per person over a lifetime.

    44. Statewide Website As aspects of care are handled by various health care providers and state agencies, families do not have a “one-stop shopping” location to navigate the complexities of Medicaid waivers, medical care options, support systems, and needed resources. Often parents are flooded with information from books and the Internet expressing multiple options and viewpoints. Families often find lack of coordinated care and case management to be overwhelming and costly.Families often find lack of coordinated care and case management to be overwhelming and costly.

    45. Options Being Explored in Various States/Federal Level Statewide Registry (identifying information removed) Early Screening Training Educators Insurance Coverage Creation of Disabilities Savings Accounts Early screening (to follow AAP suggested timeframes and assessment tools) Training educators – raising awareness; recognition; how to enhance classroom (Current Florida law has preexisting requirements for certain early childcare providers and educators) Insurance coverage (current bills SB2654 and HB 1291)Early screening (to follow AAP suggested timeframes and assessment tools) Training educators – raising awareness; recognition; how to enhance classroom (Current Florida law has preexisting requirements for certain early childcare providers and educators) Insurance coverage (current bills SB2654 and HB 1291)

    46. Additional Resources Understanding Autism Spectrum Disorders (ASDs). American Academy of Pediatrics (2006). Centers for Disease Control – Autism Information Center.

    47. Autism Spectrum Disorders: Putting the Puzzle Together in Florida

More Related