my child is on the spectrum, what now? · disclaimer: everything contained herein is provided for...

My child is on the Spectrum, What Now?

Presented by

The Spectrum of Hope FoundationCecilia Chang

Director/ Attorney at Law

1

© 2019 The Spectrum of Hope Foundation. All rights reserved.

Spectrum Hope FoundationLecture Series

Part I Autism & ABA (TODAY)

Part II Navigating the Maze of Special Education

Disclaimer: Everything contained herein is provided for general

informational purposes only and should not be misconstrued as legal,

medical, or any other type of professional advice. Nothing contained

herein is intended as a substitute for obtaining advice from your own

medical and legal professionals. The Spectrum of Hope Foundation

makes no promises, guarantees or implied agreements as to the

accuracy or completeness of anything contained or referenced to

herein, or how such may affect your family. Please seek out your own

professional advice before making any decisions concerning your

child.


Why We Exist

• Our mission – To bring hope to our children diagnosed with the autism spectrum disorder by sharing information and providing guidance.

• We’re a California 501(c)(3) private foundation

• What we do:

• Counsel parents on getting the effective, intensive and early ABA services for their children on the autism spectrum.

• We provide advocacy grants to families in need.


Autism Facts

• Autism is a neurological disorder.

• Prevalence is about 1 / 68. Gender ratio for male to female is 4:1 (U.S. Centers for Disease Control

study 2016)

• No two children on the spectrum are alike! It’s a spectrum disorder ranging from severe to mild. Some

have co-morbid condition of intellectual disability, vision impairment, etc. Some are gifted.

• There’s no physiological marker for autism- you cannot screen autism with blood test, X-ray, MRI, CT

scan, or allergy tests. Diagnosis are made by experts conducting clinical observation of the child’s

behaviors.

• We don’t know what causes autism yet. Many experts say environment/ genetic factors play in.

• No magic bullet to cure autism

• Autism is treatable, and earlier and higher quality the intervention, the better prognosis.


DSM-5 Autism Spectrum DisorderThis is what the doctors use to diagnose autism.

For full text, please visit https://www.cdc.gov/ncbddd/autism/hcp-dsm.html

Diagnostic Criteria

(Two areas)

1. Deficit in social communication/interaction

2. Restrictive, Repetitive patterns of behaviors, interest or activities.

1st criteria-

you must meet all three.

1. Deficit in social emotional reciprocity

2. Deficits in nonverbal communicative behaviors for social interaction

3. Deficits in developing, maintaining and undertaking relationships

2nd criteria- you must meet at least two out of four. 1. Stereotyped or repetitive motor movements, use of objects or speech

2. Insistence on sameness, inflexible adherences to routines, or ritualized

patterns of verbal or nonverbal behaviors

3. Highly Restricted, fixated interests that are abnormal in intensity or focus.

4. Hyper or hypo reactivity to sensory input

Three Levels of autism diagnosis Level 1- Requiring support

Level 2- Requiring substantial support

Level 3- Requiring very substantial support

Result

• If you meet both criteria, ASD dx is given

• If you meet the first criteria but not the second, then social communication

disorder is given instead of ASD.

https://www.cdc.gov/ncbddd/autism/hcp-dsm.html

(1) Impaired Social Communication

✓ Delay in language-late talker to nonverbal

(No pointing which is precursor to language)

✓ Even when verbal, difficulties with maintaining

conversation

✓ Stuck on one-way conversation/ use repetitive or

nonfunctional language

✓ Difficulties with non-verbal communication such as eye

gaze, body gesture and facial expression

✓ Hard to play with the peers.

✓ Difficulties with pretend play, role play, or interactive play

✓ Difficulties in relationship development and maintenance.

6© 2019 The Spectrum of Hope Foundation. All rights reserved.

(2) Repetitive and restrictive interests

✓ Focus on a part of an object, persistent obsession over

particular items- clothing labels, logos, dinosaurs, insects,

road signs, historical events/figures, guns, etc.

✓ Keep rituals in daily routine and doesn’t do well with changes.

Phobia with new things- new food, new places, new faces,

new setting, new items, and changes in schedules.

✓ Repetitive behavior-hand flapping, twirling, body twisting,

walking on tiptoe, or jumping

✓ Inappropriate play w/ toys

lining up cars, spinning the wheels of toy cars


In Sum

8

Social

communication

impairment

Restrictive /Repetitive

behavior

Autism Spectrum Disorder


Who Can Diagnose Autism?

1. Regional Center

Services from womb to tomb including free Assessment. This is the first place to call

when autism is suspected.

2. School District

For child over the age of 3, contact your local school district for free assessment. If

found eligible (autism) then you open an IEP (Individual Educational Plan- more on

that later)

3. Professionals

Clinical psychologist, neurologist or physicians specializing in developmental disorder.

An expert with advance degree in psychology, child education or developmental

disabilities with extensive clinical experience with children on the autism spectrum.

*General practitioner such as regular pediatricians are not considered professional to diagnose autism.

Assessment done oversea is considered helpful but not determinative, meaning new assessment in the US is

most likely required.


What Does Assessment Include?

(1) Test / Evaluation of a whole child on

• intelligence, academic skills,

• social skills,

• communication skills – receptive and express language,

• sensory function,

• adaptive skills,

• gross motor skill/ fine motor skill

(2) OBSERVATON: Child at home, at school

(3) INTERVIEW/ QUESTIONNAIRES – child’s parents, teachers


How Does Autism Impact My Child?

Autism affects each child differently but core common traits are:

• It limits communication skills

• It limits social interaction skills

• It restricts and limits the child’s interest

• It may limit intelligence and adaptive skills

Many children with autism don’t learn the same way as the typical children because they lack the basic skills to pick up and process the information. This lack of fundamental skill results in delay in language, play and social skills and ultimately their ability learn like rest of us- by observing and imitating.


The Gap Widens over Time

Due to inability to learn like everyone else, the developmental gap between children with autism and typical children widens over time. (Biological age vs developmental age)

0

2

4

6

8

10

12

Age 2 Age 4 Age 6 Age 10

Typical

Autistic


Just Around the Corner...

http://pediatrics.aappublications.org/content/129/6/1042

• Adolescents with ASD scored lower than adolescent with other disabilities (learning disability, language impairment) in employment and advanced educational attainment.

• Adolescents with ASD and their ability of employment and higher education attainment largely depended on the income level of the family and the severity of autism .

• Only about 25-50% of adolescents with ASD had paid work and many of them were underemployed or had difficulties with sustaining employment.


Where are Adults with Autism today?(Autism Social of United Kingdom)

• 49% are living at home with their parents

• 33 % are living in residential care

• 3% live fully independently

• 8% live independently with support

• 12%-14% are in full-time paid employment

• 65% report difficulty making friends

• 31% are in no social activities at all

• 72% have unusual or antisocial behaviors

• 56% have suffered from depression


Importance of Early Intervention

Without it, 90% of the children with autism will require special care and support throughout life.

Early effective intervention means less need for support later. Without it, child may regress and require substantial support throughout life.

Early intervention means intervention before the age of three. It does not mean it is not effective for older children but rather the earlier the better.

The cost of life-long support being USD $1.4 million, the effective ABA program is much better deal for tax payers, not to mention for the affected family.


So Keep in mind!

Early Diagnosis Early Intervention

Quality of life


The World of Autism Treatments

Behavior Based

• Verbal Behavior

• ABA (including Discrete Training Therapy “DTT” )

• Based on scientific peer reviewed researches.

• Covered by health insurance

Development Based

• Focus on relationship with others

• Play therapy

• Floor time

• Son-Rise

• Relationship Development Intervention (“RDI”)

• No scientific evidence

Supplemental Therapies

• Speech therapy

• Occupational therapy

• Sensory therapy

• Physical therapy

Bio Medical

Gluten-Free/Casein- Free diets

• Vitamin and nutrition supplementation

• Chelation.

• DAN doctors

• No vaccination?

• No scientific evidence

• Some are dangerous/ unethical

Miscellaneous

• Music therapy

• Auditory Integration

• Facilitation Communication

• Horseback Riding/ Dolphin therapy


Why ABA?(Lovaas Research: http://rsaffran.tripod.com/research1.html )

• Dr. Lovaas of UCLA study research

18

Normalfunctioning-47%

Significantimprovement-41%

Little progress-11%


http://rsaffran.tripod.com/research1.html

Compare to No ABA

Normal Functioning-2%


Not All Treatments are Equal(Howard et al, 2004, based on 14 months of interventionwww.ctfeat.org/articles/ABAvEclectic.pdf)

Treatment type

Intensive ABA

( 30-40hr/wk)

Eclectic -Total 25 -30 hrs/wk (autism class, sensory

integration, PECS, speech therapy,

TEACCH, Floor time)

Special Day class offered in school

Total 15 hrs/wk

Results

Overall improvement in functions

Significantly lower rate of improvement than

the intensive ABA program with a few

parts showing regression after 14

months

Regression found in many areas. The

overall results were similar to the eclectic

approach


http://www.ctfeat.org/articles/ABAvEclectic.pdf

What Does Research-Based ABA Look Like?

2. 1:1 teaching

1. Intensity

30-40 hrs/wk

3. Address all aspects of

child’s disability

4. Focus on Generalization

6. Constant monitoring

and calibration

based on data

5. Quality

program supervision


Why 30/40 Hours a week?

• In short- To close the gap with the typically developing kids.

Ex: If your child is 2 years behind the typically developing kids in language skills, the child must acquire 2 years of language PLUS whatever the typically developing kids are currently acquiring. Otherwise he/she will always be left behind.

• There’s a correlation between the number of hours of intervention and the outcome of the therapy.

• Programs that are more intensive in hours produce better and longer lasting results.

• Research indicates that 30-40 hours per week is appropriate for the majority of young autistic children.

• An ABA provider should make recommendation for hours based on research and the child’s needs, not what the school district/insurance are willing to fund.


Your ABA Treatment Team

• The Lead- Board Certified Behavior Analyst (BCBA)

This person assesses the child, develops the ABA program individually tailored to the child, form a treatment team, train and supervise the therapists, analyze data collected by therapists and make changes to the treatment plan, hold clinical meetings to make sure all are on the same page, conduct parent training, write progress reports and attend your IEP meetings.

• 2-4 therapists- also called technician.

Under the supervision of BCBA, the therapist provide 1:1 teaching, school/community shadowing while collecting data at all times.


Consistency- Your Key to Success

• To maximize effectiveness, the treatment team must be consistent in treating the child. Clinic meetings are held on a regular basis by the treatment team to calibrate and to ensure all therapists are on the same page in teaching the child.

• It’s also important for parents to be on the same page with the treatment team. Parents must attend the clinic meetings and know their child’s treatment plan and the progress. As children spend most of their time outside the therapy sessions with parents, parents can provide round the clock opportunity for generalization of skills learned in the therapy.


The Best Outcome Factors in Dr. Lovaas Research

• Start before the age of 4

• Intensive and consistent treatment (typically 30-40 hours a week )

• Involved participation by the caregivers (parents)

• 1:1 Treatment

• Treatment taking place in the most natural environment appropriate for age (for example, for child 2-3 years old, home is the most natural environment where as older kids it may be school and playground)

• Be consistently exposed to typically developing peers (regular education classes) so they can serve as peer role models demonstrating typical language, behaviors and the play skills.


Starting Point @HOME

• Tasks are broken down into short simple trials.

• Children are motivated by using positive reinforcements. (Their favorite toys, food, tons of praises)

• Clear, consistent learning environment.

• Skills are explicitly taught so they don’t have to rely on observational learning.


NEXT @ school!

Super important but often overlooked – Once the child learns basic skills at home, they are ready to practice what they learned in a group learning environment such as school where they can learn from the typically developing peers. ABA therapist accompanies the child and facilitate the generalization.(This is called shadow or 1:1 aide) Their goal is to facilitate the social skills as well as generalization of skills learned at home and to foster independence so the shadowing can eventually fade away. Shadowing is not just chaperoning or baby sitting but requires a lot of training, calibration, data collection and supervision. Parents must be aware that at times, an 1:1 aide is provided by school district (not a trained ABA therapist of the treatment team) who unintentionally undo the skills learned at home. This is due to lack of training and supervision. Quality of shadow matters!


@ Community! ABA therapist can accompany child in various community settings to teach appropriate behaviors: market, library, birthday party, play ground and Gymboree class.


Sample ABA Program for 1-8 Year Olds

29

Language acquisition

(Matching, Receptive, Expressive)

Motor development

(Visual, Fine, Gross, Oral Motor Skills)

Play skills

(Independent, pretend, interactive, constructive,

electronic)

Behavior Management

(replace maladaptive behaviors with

appropriate behaviors)

Cognitive Development

(Desire, Intentions, Emotions, Senses, Cause and Effect,

Deception, Sarcasm)

Social skills

(Social language, Social interaction, Self-esteem, social context, Social

rules)

Independence at school

(1:1 ABA shadow)Daily Living (Personal, Domestic, Community,

Safety)

Theory of Mind and Executive Functions (Attention, memory, inhibition, flexibility,

problem solving)


Sample ABA Program for 9-21 Year Olds

30

Language acquisition

Functional and Basic Language

Behavior management

Treat Challenging behaviors

Daily Living Skill

Personal management

Vocational Skills

Academic Development

Language art, math, science, social

studies

Social Skills

Social cues, social norms, recreation

Independence at school Social communication

and Language


Sample Treatment plan

Year Services Skills

Year 1 30-40 hrs/wk 1:1 teaching @home Follow instruction, pay attention, self-

feeding, changing clothes, washing,

toilet training, imitation skills, expand

vocabulary, make requests, respond

to request.

Year 2 5-10 hrs/wk ABA shadow @ regular preschool

25-35 hrs/wk 1:1 teaching @ home

Social skills, pretend play, complex

language, description, emotion

awareness, social awareness, cause

and effect, generalization of skills

learned at home

Year 3 15 hrs/wk of ABA shadow @ regular kindergarten

20 hrs/ wk 1:1 teaching @ home

Independence at school- interaction

with peers during recess and lunch.

More abstract thinking. Proper

behaviors, theory of mind, empathy,

observational learning and social

skills.

Year 4 30 hrs/wk ABA shadow @ regular 1st grade

10-15 hrs/wk 1:1 teaching @ home

Social skills development, pragmatic

language, academic development,

theory of mind, understanding of

more complex and abstract situation.


Your Key in Getting ABA program-

Independent Education Evaluation (IEE)

• You can ascertain your child’s developmental age vs chronological age. This information helps to set the

goals.

• IEE is conducted by a person without ties to funding sources for ABA, like Regional Center, Health

Insurance or school district. Therefore you can be assured that the assessment is unbiased.

• IEE can provide individually tailored recommendation and treatment plan. Consider IEE like a prescription

for drugs which you will take to the pharmacy to fill. (Prescription = IEE, pharmacy= school, health

insurance and regional center)

• IEE expert can testify for you in case you get a push back from the school, regional center or health

insurance company who are responsible to fund the program.

• Much like how you cannot get the medication without prescription, without IEE recommending intensive

ABA, it’s very difficult to get research-based ABA.


Sample IEE Recommendation

✓30-40 hours/week of ABA service and additional hours for BCBA supervision and

clinic meetings

✓2 hours/week of 1:1 Speech therapy

✓2 hours/week of 1:1 Occupational Therapy

✓Physical therapy (if needed)


Who Pays for ABA?

If under 3:

• Health insurance: First, call the ABA agency you’re considering, ask them (1) what kind of insurance they accept, and (2) what type of document the insurance requires for funding.

• Contact regional center regardless and start the intake process. Regional Center provides free assessment.

• Regional Center as the payor of the last resort, also provide funding for ABA if insurance denies funding. It also providesspeech therapy, occupational therapy, physical therapy and respite care tailored to individual needs.

If over 3:

• Home portion of the ABA is picked up by the health insurance/Regional Center.

• Educational portion of ABA (1:1 ABA shadow at school) is picked up by the school district


Who Pays What?

Regional Center

RC provides service from the womb to the tomb

for people with developmental disability who

are “SUBSTANTIALLY "impaired.

They cover services outside the school .

1. ABA home service (with Health insurance)

2. Social skills

3. Adaptive skills

4. Safety issue

5. Respite care

6. Advocacy

School District

Education focus

1.1:1 ABA aide at school

2.Speech therapy

3.Occupational therapy

• Education is more than academic but also social skills necessary to attend school.

• IDEA- (Individuals with Disabilities Education Act) applies.


Getting Ready for the IEP meeting

1. Remember, everybody is nice! No one cares about your child more than you do.

2. Email school 24 hours ahead to let them know that you will be audio recording the meeting

3. Keep a good record of all your child’s report (assessments) in chronological order.

4. Peruse your child’s assessment and highlight as needed.

5. Make a wish list of services you think your child needs, the hours and why.

6. To enable #5 to happen, you may need an IEE (Independent Education Evaluation). If you want reimbursement of the IEE cost, prior consultation with special education attorney is advised

7. Listen intently at the meeting, don’t be defensive or offensive but be courteous and engaged. Request everything in writing. (If not in writing, nothing happens)

8. At the end of the meeting, do not sign anything other than the fact that you were present at the meeting. Take a good look at the IEP note to make sure all that was said is captured in writing. Let the school know you are going to think it through before signing anything

9. If necessary, consult a special education attorney.

**Remember when it comes to your child’s special education, you’re an equal partner with the school district.


Your 3-Steps to Getting ABA program Contact ABA agency

• For southern CA families, go to lafeat.org where they keep a list of top notch ABA agencies/ IEE

providers and special education attorneys. Call ABA providers and start the intake process

• Ask if they serve your area, what type of insurance they take, if they have contract w/ your school

district, when they can start the service. Get on the waiting list and go with the first available agency.

Get IEE

• Most likely you will need an IEE for the school to fund a private ABA services. In certain cases,

school reimburse you for the IEE expenses. Ask special education attorney for a referral of IEE

provider or if you’re in southern CA, go to lafeat.org for a list of dependable IEE providers.

• IEE will generally require multiple days for clinical assessment, school observation as well as

parent/teacher interviews.

Consult special education attorney

• The law allows reimbursement of attorneys fee in case of IDEA violation

• Given most of ABA cases are funded through legal settlements with the school district, a visit to

special education attorney is warranted.


ABA Terms You Should Know

• Probing-skill assessment

• Stimuli- stuff used to teach skills

• Reinforcement- activity, item or food that will motivate

your child to learn

• Prompt- a supportive cue to help the child follow the

instruction given (ex: verbal, modeling, physical, gstural,

positional)

• Drill- a discrete trial from beginning to end


Advocacy Grant Program

Our grant is to help families with:

(1) Young child under the age of 7

(2) with autism diagnosis or is suspected of being on the spectrum

(3) Combined family income of $70,000 a year

(4) Proof of CA residency for at least one year

(5) Other funding sources that usually provide services are exhausted

(6) Demonstrate the needs in the application- why do you need the grant?

(7) Grant monies will be used to offset costs with (a) IEE (b) attorneys fees/expert witness fees (c) self-funding of ABA therapy

(8) The Maximum grant amount is USD$1,000.

Download application at www.spectrumhope.org

39© 2019 The Spectrum of Hope Foundation. All rights

reserved.

http://www.spectrumhope.org/

my child is on the spectrum, what now? · disclaimer: everything contained herein is provided for...

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