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

orlando@autismspeaks.org 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. 3176egarcia@legalaidocba.org

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.