essential legal advocacy for youth with autism: beyond dependency court
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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. www.autismspeaks.org. Overview. Statistical Data - PowerPoint PPT PresentationTRANSCRIPT
Ericka Garcia, Esq.Developmental Disabilities Attorney
Guardian ad Litem Program Legal Aid Society of the OCBA
January 14, 2014
www.autismspeaks.org
OverviewStatistical Data
What is Autism Spectrum Disorder (ASD)?
Specialized Services/Resources for Children
GAL Advocacy
Discussion/Q&A
Statistical Data1 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
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
What are Developmental Disabilities?
AutismA 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)
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
Autism Met the full criteria under DSM-IVSigns and Symptoms include
Social ChallengesCommunication issuesRepetitive BehaviorsAssociated Medical Conditions may include
Genetic Disorder Gastrointestinal Distress Seizure Disorder Sleep Dysfunction Sensory Processing Problems Pica
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
Behaviors Associated with Asperger Syndrome
Limited or inappropriate social interactions“robotic” or repetitive speechChallenges 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.
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
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
How is ASD diagnosed? Physicians such as Developmental Pediatrician,
Neurologist, PsychiatristPsychological 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
Specialized Services for Children/Youth with ASD
Social Security
Medicaid Therapies Occupational Physical Speech Applied Behavioral Analysis (ABA)
Educational
Other types of Therapies
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
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
Social Security
Tips for Applying Keep copies of everything that is submittedHelp your application by compiling all medical and educational records from the past three years Respond promptly to all requests, in person if possibleIf approved, continue to carefully read and respond to all correspondenceIf denied, contact your local Legal Aid program promptly
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
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
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
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
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
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
beltExtended School Year Services
Will the child regress significantly?
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
Other Types of TherapiesFreedom Ride
Horseback lessonsArt or music therapySwimming 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
ResourcesThe Agency for Persons with Disabilities
(APD)
Autism Speaks
UCF Center for Autism and Related Disorders (CARD)
UCP of Central Florida
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
Some Available APD ServicesAdult Day Training (older than 21)Behavior Analysis ServicesIn-Home Support Services (Mentors)Personal Care Assistance (older than 21)Residential Habilitation (Group Home)Respite CareSupported Employment (older than 21)Transportation
Autism SpeaksWebsite is comprehensive
www.autismspeaks.org Autism Speaks 100 Day Kit Contact National office at 1-888-AUTISM 2Contact Local Office
[email protected] or 407-478-6330Annual 5k Walk with an extensive local
resource fair
UCF Center for Autism and Related Disorders (CARD)
Website is located at http://www.ucf-card.org/ Does not provide direct services, but rather
referralsFamily Education Seminars
Live or webinars Support Groups for person with ASD and family Social events Yearly conference for parents & educators is
held in January
UCP of Central FloridaWebsite is located at http://www.ucpcfl.org/ Orange County Charter School, Daycare services
& summer campsIf child is attending school, transportation will
not be provided by the public school systemTherapies 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 familyFamily Fun Nights and Festivals
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 caregiverIs 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
Court AdvocacyRequest 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 ofPermanency 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
Out-of-Court AdvocacyAttend all staffings related to the child or
request coverage from the GAL ProgramIf you can’t attend an IEP meeting, with notice,
the GAL Program can attend on your behalfRequest 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
Any Questions? Ericka Garcia, Esq.
Developmental Disabilities Attorney
Guardian ad Litem Program Legal Aid Society of the OCBA,
Inc.100 E. Robinson StreetOrlando, Florida 32801
(407) 841-8310 ext. [email protected]
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.