Essential Legal Advocacy for Youth with Autism: Beyond Dependency Court

1. Essential Legal Advocacy for Youth with Autism: Beyond Dependency Court Ericka Garcia, Esq. Developmental Disabilities Attorney Guardian ad Litem Program Legal Aid Society of the OCBA January 14, 2014

2. www.autismspeaks.org

3. Overview • Statistical Data • What is Autism Spectrum Disorder (ASD)? • Specialized Services/Resources for Children • GAL Advocacy • Discussion/Q&A

4. Statistical Data • 1 in 88 American children has an Autism Spectrum Disorder (ASD) • 1 in 54 boys • Autism occurs in all racial, ethnic and social groups • ASD can be reliably diagnosed by age 2, but many children can be diagnosed at even younger ages • Florida claims there were 8,0000 Children on Medicaid with an ASD at the time of the ABA lawsuit

5. Statistical DataOrange County • 1171 children with open cases • Approximately 19% have an identified or suspected developmental disability • 20% to 60% includes all disabilities Data is as of 1/7/2014

6. What are Developmental Disabilities? • A disorder or syndrome attributable to • Autism • Cerebral Palsy • Down Syndrome • Prader-Willi Syndrome • Intellectual Disability • Spina Bifida • Must manifest prior to age 18 • Constitute a substantial handicap that will likely be indefinite Florida Statute §393.063(9)

7. Autism A pervasive, neurologically based developmental disability of extended duration which causes severe learning, communication, and behavior disorders with age of onset during infancy or childhood. Individuals with autism exhibit impairment in reciprocal social interaction, impairment in verbal and nonverbal communication and imaginative ability, and a markedly restricted repertoire of activities and interests. Florida Statute §393.063(3)

8. What is Autism Spectrum Disorder? • General term for a group of complex disorder of brain development • Characterized, in varying degrees, by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors • Diagnosis Under DSM-IV • Autism (Classic), Asperger’s, Pervasive Developmental Disorder-Not otherwise specified, and Childhood Disintegrative Disorder • Diagnosis Under DSM-V • They were merged into one umbrella diagnosis of ASD & now rated by severity For more information, visit: www.autismspeaks.org

9. Autism • Met the full criteria under DSM-IV • Signs and Symptoms include • Social Challenges • Communication issues • Repetitive Behaviors • Associated Medical Conditions may include • Genetic Disorder • Gastrointestinal Distress • Seizure Disorder • Sleep Dysfunction • Sensory Processing Problems • Pica

10. Asperger Syndrome • Considered to be “high functioning” • Difficulty with social interactions and exhibit a restricted range of interests and/or repetitive behaviors • Compared to other forms of ASD, they do not have significant delays or difficulties in language or cognitive development • Usually remains undiagnosed until a child or adult has serious difficulties in school, the workplace or their personal lives • May be initially diagnosed with ADHD, until it becomes clear their issue stems more from an inability to socialize rather than inability to focus

11. Behaviors Associated with Asperger Syndrome • Limited or inappropriate social interactions • “robotic” or repetitive speech • Challenges with nonverbal communications coupled with average to above average verbal skill • Inability to understand social/emotional issues or nonliteral phrases • One-sided conversations • Awkward movements and/or mannerisms Behaviors are seldom all present in any one individual and vary widely in degree.

12. Pervasive Developmental Disorder- Not Otherwise Specified (PDD-NOS) • Diagnosis applied to children or adults who are on the autism spectrum, but did not fully meet the criteria for another ASD • Like all forms of autism, PDD-NOS occurred in conjunction with a wide spectrum of intellectual ability. • Diagnosis was used for someone who had some, but not all characteristics of autism or who had relatively mild symptoms • Ex. Person may have had significant symptoms in one core area such as social deficits, but mild or no symptoms in another core area such as restrictive, repetitive behaviors

13. PDD-NOSThree Examples of Subgroups • One group was known as high functioning whose symptoms largely overlapped with that of Asperger syndrome, but may have had a speech or cognitive impairment • This group’s symptoms more closely resembled those with autistic disorder, but did not fully meet all signs and symptoms • Another group met all the diagnostic criteria for autistic disorder, but whose stereotypical and repetitive behaviors were noticeably mild

14. How is ASD diagnosed? • Physicians such as Developmental Pediatrician, Neurologist, Psychiatrist • Psychological testing by a licensed Psychologist • Educational testing by School Psychologist • Children should be screened by their pediatricians at the 18- and 24-month check-ups. • Modified Checklist of Autism in Toddlers (MCHAT) • If there are concerns, a child will be referred to a specialist listed above

15. Specialized Services for Children/Youth with ASD • Social Security • Medicaid Therapies • Occupational • Physical • Speech • Applied Behavioral Analysis (ABA) • Educational • Other types of Therapies

16. Social Security • Supplemental Security Income (SSI, also called Title 16) • Means-tested & must be disabled • Cash benefit & automatically eligible for Medicaid • Children in foster care qualify for financial part since only their income counts • Youth may never have more than $2,000 in assets at any time or they will lose their benefit

17. Social Security • Supplemental Disability Security Income (SSDI, also called Title II or RSDI benefits) • Unlike SSI, not income based, but based on earnings • A child may receive a cash benefit if a parent is getting SSDI • A youth may get a combination of both SSI and SSDI, depending upon the earning history of the parents or whether the youth has worked • Survivors benefits • For child of deceased person that worked enough quarters • There is no asset limit for this program

18. Social Security • Tips for Applying • Keep copies of everything that is submitted • Help your application by compiling all medical and educational records from the past three years • Respond promptly to all requests, in person if possible • If approved, continue to carefully read and respond to all correspondence • If denied, contact your local Legal Aid program promptly

19. Occupational Therapy (OT) • Helps acquire the skills needed to perform the activities of daily living • Using scissors • Turning pages • Using a pencil properly • Climbing stairs • Children and adults can receive OT • Evaluated by an Occupational Therapist • Service can be provided at home, daycare or school • If found eligible, Medicaid or insurance has to approve the treatment plan • If denied, this can be appealed, so contact your local Legal Aid promptly

20. Physical Therapy (PT) • Develop their mobility and gross motor skills • Gross Motor Skills • Stand up • Walking • Running • Climbing stairs • Jumping • Children and adults can receive PT • Evaluated by an Physical Therapist • Physical therapists also use assistive devices such as walkers, braces when needed • Service can be provided at home, daycare or school • If found eligible, Medicaid or insurance has to approve the treatment plan • If denied, this can be appealed, so contact your local Legal Aid promptly

21. Speech Therapy (ST) • Acquiring and development of age-appropriate communication skills • Addresses oral-motor and feeding difficulties • Children and adults can receive ST • Evaluated by a Speech Language Pathologist • Service can be provided at home, daycare or school • Children must pass hearing test or get hearing aids before meaningful therapy can begin • If found eligible, Medicaid or insurance has to approve the treatment plan • If denied, this can be appealed, so contact your local Legal Aid promptly

22. Applied Behavioral Analysis (ABA) • Use of positive reinforcement to bring about meaningful and positive change in behavior • Techniques can be used in structured situations such as school or even in the home during typical situations such as eating dinner • Extremely individualized treatment plan and goals • Until recently, children in Florida on Medicaid were precluded from getting ABA while the Legislature required that children with private insurance receive it • If found eligible, Medicaid or insurance has to approve the treatment plan • If denied, this can be appealed, so contact your local Legal Aid promptly

23. Educational • If a parent suspects that a child has ASD, they should immediately request that the child be evaluated • If found eligible for services, an Individual Education Plan (IEP) will be created & updated annually • While the evaluation is pending, the child can still receive extra supports in class • Even if the family has medical evaluations confirming the ASD diagnosis, which they should provide, the school will likely do their own testing • There are various ways to appeal any decisions a school makes through the evaluation and IEP process

24. Educational • Therapies • Occupational, Speech & Physical Therapy • Behavioral Therapy • Ages 3 and up • It must provide an educational benefit • Assistive Technology • Child with ASD may benefit from an IPad • Transportation • Child with ASD may need an aide or special seat belt • Extended School Year Services • Will the child regress significantly?

25. Age Ranges for Therapies • Birth to 36 months • Early Steps provides therapies at home or in daycares • Individual/Family Service Plan (IFSP) • Ages 3 to 5 • Orange County Public Schools through Prediagnostic Services • An IEP can be incorporated in the daycare • A child may be recommended to attend a full-time ESE program in an elementary school depending on the results of their evaluation • School age • Therapies can be through school and Medicaid

26. Other Types of Therapies • Freedom Ride • Horseback lessons • Art or music therapy • Swimming programs • Altamonte Springs Recreation, Therapeutic Pool • Open to residents and non-residents • Summer Programs • UCP of Central Florida – Traditional day camp • Shakespeare with Heart – through Orlando Shakespeare Theater • Camp Thunderbird – Sleep away camp

27. Resources • The Agency for Persons with Disabilities (APD) • Autism Speaks • UCF Center for Autism and Related Disorders (CARD) • UCP of Central Florida

28. The Agency for Persons with Disabilities • State of Florida agency that provides an array of services for those with developmental disabilities • To Qualify • Live in Florida • Meet the statutory definition of a developmental disability • Age three (3) and up • High Risk until age 5 • Waiver Services must be needed for the person to remain in the community • Meet “level of care” criteria for placement in an ICF/DD

29. Some Available APD Services • Adult Day Training (older than 21) • Behavior Analysis Services • In-Home Support Services (Mentors) • Personal Care Assistance (older than 21) • Residential Habilitation (Group Home) • Respite Care • Supported Employment (older than 21) • Transportation

30. Autism Speaks • Website is comprehensive www.autismspeaks.org • Autism Speaks 100 Day Kit • Contact National office at 1-888-AUTISM 2 • Contact Local Office • orlando@autismspeaks.org or 407-478-6330 • Annual 5k Walk with an extensive local resource fair

31. UCF Center for Autism and Related Disorders (CARD) • Website is located at http://www.ucf-card.org/ • Does not provide direct services, but rather referrals • Family Education Seminars • Live or webinars • Support Groups for person with ASD and family • Social events • Yearly conference for parents & educators is held in January

32. UCP of Central Florida • Website is located at http://www.ucpcfl.org/ • Orange County Charter School, Daycare services & summer camps • If child is attending school, transportation will not be provided by the public school system • Therapies are provided in-house for children in school and those in preschool • Inclusive program • Outpatient therapy is also available for any child • Counseling for parents or family • Family Fun Nights and Festivals

33. What do GALs need to know to successfully advocate? • Get to know the child! • Advocating for a child with ASD may take different approaches and multiple visits before a bond may be formed • Even if the child is non-verbal, you should visit often • Get to know the caregiver • Is the caregiver getting all of the services they’ve requested for the child? • Are they in need of respite? • By forming that bond, they’ll call you when issues arise • Introduce yourself to the teacher and/or therapists • If something comes up, they’re likely to alert you

34. Court Advocacy • Request court orders with specific date deadlines • Ex. Child needs PT, ST & OT, but case manager hasn’t submitted a referral and several months have passed • GAL filed a motion with the court requesting monthly status hearings until the child began her therapies • GAL Report should specifically address any and all therapies the child is in need of • Permanency is paramount and one of the best ways to ensure this is to make sure the child is stabilized quickly • Courtroom attorneys can always assist with advance notice

35. Out-of-Court Advocacy • Attend all staffings related to the child or request coverage from the GAL Program • If you can’t attend an IEP meeting, with notice, the GAL Program can attend on your behalf • Request and review medical and school records • Ensure that the Comprehensive Behavioral Health Assessment (CBHA) is completed & review for recommendations • Request staffings when services are not being implemented or other issues arise • Stay in regular communication with the Dependency Case Manager, his or her supervisor and the DCF Attorney

36. Any Questions? Ericka Garcia, Esq. Developmental Disabilities Attorney Guardian ad Litem Program Legal Aid Society of the OCBA, Inc. 100 E. Robinson Street Orlando, Florida 32801 (407) 841-8310 ext. 3176 egarcia@legalaidocba.org

37. The author(s) of this publication hereby acknowledge Autism Speaks Family Community Grants as the funding agency for the project leading to this publication. The views expressed in this publication do not necessarily express or reflect the views of Autism Speaks or any other funding agency.