[PDF] - 1 Autism Spectrum Disorders (ASDs) Pervasive Developmental PDF Document

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Autism Spectrum Disorders and the Role of Public Health April 17, 2008

Autism Spectrum Disorders (ASDs):

Perspectives on Surveillance, Research, and Early Identification

NAACHO Webcast April 17, 2008

Catherine Rice, Ph.D. Katie Kilker, MPH, CHES

National Center on Birth Defects and Developmental Disabilities

Centers for Disease Control and Prevention

CDC, our planners, and our presenters wish to disclose they have no financial interest or other relationships with the manufacturers of commercial products, suppliers of commercial services, or commercial

supporters. Presentations will not include any discussion of the

unlabeled use of a product or a product under investigational use.

What is Autism?

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Autism Spectrum Disorders (ASDs) Pervasive Developmental Disorders (PDD) PDD = an “umbrella category”

Autism PDD-NOS (Atypical Autism) Asperger’s Syndrome Childhood Disintegrative Disorder Rett’s Syndrome

3 Core Areas Affected: ⇒Reciprocal Social Interactions ⇒Communication ⇒Behaviors and Interests

Development in these areas follows a DIFFERENT

path than that of most children. Differences are QUALITATIVE, not only the result

f delays.

What is Autism?

Developmental Disability

not identifiable at birth

Neurological Disorder

complex genetic interaction + ???

Complex Disorder

many areas affected

Wide Range of Impairment

mild to severe across areas

SLIDE 3

3 ASD ASD Defies Generalization

Measured Intelligence

Severe-----------------------------------------------Gifted

Social Interaction

Aloof-----------------Passive-------------Active but odd

Communication

Nonverbal-------------------------------------------Verbal

Behaviors

Intense---------------------------------------------------Mild

Sensory

Hyposensitive-----------------------------Hypersensitive

Motor

Uncoordinated-------------------------------Coordinated

Diagnosis

Based on observable behaviors
Pattern of development
Social, Communication, Behavioral

Profile (DSM-IV Criteria)

Developmental history is important
There is no medical test to diagnose

autism or related disorders

Rule out other disorders

Myths of Autism

The child with autism…

– Is not affectionate – Does not form attachments – Never makes eye contact – Does not communicate – Engages in self-stimulatory and repetitive behaviors all the time – Lack emotional experience

SLIDE 4

4 Issues of “Autism” Label

Rarely diagnosed before 3 years (improving)
Fear associated with “Autism”
Stereotypes of the person with autism
Boys and developmental milestones
“wait and see” approach
Subtler forms misdiagnosed
Access to services/treatment
Early and intense intervention makes a

difference!

What is Asperger’s Syndrome?

No delay in basic language skills, but

communication may be impaired

Average to above average intelligence
Common issues as high-functioning autism
Pattern of unusual development in social

interaction skills and behaviors

Impairment in daily functioning, despite skills
Often not diagnosed until 6+ years
Early diagnoses: ADHD, OCD, LD, NVLD

Impact of ASD on Child

Inability or difficulty communicating – frustration
Reduced understanding of what is going on around

them

Lack of interest or skill in interacting
Unusual play and learning
Unusual sensory reactions
Variable attention, activity level
Other medical issues or sensitivities (seizures, GI

distress, allergies, etc.)

SAFETY (reduced awareness, reaction, and self-

injury)

SLIDE 5

5 Impact of ASD on Family

Lack of support from other family members and

community (know something is not going right)

Navigating system to get help –

– Just getting recognition of a problem is often a challenge – Hard to get intense intervention – Long waits for diagnosis

Significant stress on parents and entire family
Siblings may also have difficulties, or must act as

“caretaker”

Intense and complicated needs of child
Emotional and financial costs of identifying problem

and getting support

Bombarded by options of interventions

Concerns Over Numbers of People with Autism

Low Incidence Disorder?

Past estimates of 4-5 per 10,000 children with autism

Service Provider Numbers: show more people identified with an Autism Spectrum Disorder (ASD) for services

!"#$%&'

$" ( ) !* +"

Number of Children with Autism Served under IDEA, Part B, 1992-93 to 2000-01, 6-21 years Quarterly Trends in Number of Persons with Autism Added to the System (1994-2004)

100 200 300 400 500 600 700 800 900 1 2 3 4 5 6 7 8 9 10 11 Year Number (1994 -2004) Number Increased per Quarter Fourth Qtr Third Qtr Second Qtr First Qtr

Public Health Model

Συρϖειλλανχε Συρϖειλλανχε Συρϖειλλανχε Συρϖειλλανχε

Ωηο ισ αφφεχτεδ? Ωηο ισ αφφεχτεδ? Ωηο ισ αφφεχτεδ? Ωηο ισ αφφεχτεδ?

Ρεσεαρχη Ρεσεαρχη Ρεσεαρχη Ρεσεαρχη

Ωηο ισ ατ ρισκ? Ωηο ισ ατ ρισκ? Ωηο ισ ατ ρισκ? Ωηο ισ ατ ρισκ?

Πρεϖεντιον Πρεϖεντιον Πρεϖεντιον Πρεϖεντιον

Ηοω χαν ωε ρεδυχε ρισκ Ηοω χαν ωε ρεδυχε ρισκ Ηοω χαν ωε ρεδυχε ρισκ Ηοω χαν ωε ρεδυχε ρισκ ανδ ιµπαιρµεντ? ανδ ιµπαιρµεντ? ανδ ιµπαιρµεντ? ανδ ιµπαιρµεντ?

SLIDE 6

6 CDC Programs Specific to ASDs

Surveillance/Monitoring—Address

questions on the prevalence/trends

Epidemiologic Research: Examine

risk/protective factors

Prevention— “Learn the Signs. Act

Early.”

What’s in a Number?

1 in 10,000 4-5 in 10,000 1 in 1,000 1 in 500 1 in 200 1 in 166

1 in 150 What’s in a Number? How do we know who is affected?

It is clear that more children are identified

with an Autism Spectrum Disorder (ASD) than in the past.

– Children receiving services under a specific classification – Children diagnosed in a medical or clinical setting

Who else may have the condition(s)?

– Little population-based data of the features of ASDs

Population screening

– Direct screening – who participates? – Records-based screening

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Metropolitan Atlanta Developmental Disabilities Surveillance Program (MADDSP)

– Ongoing, active monitoring program since 1991 – 5 counties of metro Atlanta – Multiple sources (educational, clinical, service sources) – 5 Disabilities:

Mental Retardation/

Intellectual Disability

Cerebral Palsy
Hearing Loss
Vision Impairment
Autism Spectrum Disorders (since 1996)

How do the prevalence of ASDs compare with other DDs?

MADDSP Prevalence of Developmental Disabilities per 1,000 8-year-olds in 2000

Intellectual Disabilities 12.0 Autism 6.5 Cerebral Palsy 3.1 Hearing Loss 1.2 Vision Impairment 1.2

Karapurkar-Bhasin, Brocksen, Avchen, Van Naarden Braun. Prevalence of four developmental disabilities among children aged 8 years - the Metropolitan Atlanta Developmental Disabilities Surveillance Program, 1996 and 2000. MMWR SS 2005;55;1–9.

Prevalence of MR, CP, HL, VI and ASDs Among Children in MADDSP 8 year olds (1991-1994, 1996, 2000, 2002)

15.5 13.2 13.0 13.0 10.6 12.0 12.8 3.8 3.1 3.6 3.4 3.5 2.9 2.9 1.3 1.4 1.5 1.4 1.2 0.9 1.4 1.0 1.4 1.1 1.1 1.0 4.2 6.5 7.6

0.30103

0.30103 0.60206 0.90309 1.20412 1991 1992 1993 1994 1996 2000 2002 Surveillance Year Prevalence per 1,000 Mental Retardation Cerebral Palsy Hearing Loss Vision Impairment Autism Spectrum Disorders 16.0 1.0 0.5 8.0 4.0 2.0

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CDC has formed the Autism and Developmental

Disabilities Monitoring (ADDM) Network in an effort to better understand the ASDs in the US.

This is the first and largest multi-site report on

ASD prevalence to use common methods in the US to date. Autism and Developmental Disabilities Monitoring (ADDM) Network

Washington Montana Oregon Nevada California Utah Arizona New Mexico Colorado Idaho Wyoming North Dakota South Dakota Minnesota Iowa Nebraska Kansas Texas Florida Mississippi Louisiana Alabama Georgia South Carolina North Carolina Virginia Maine New York Michigan Wisconsin Oklahoma Missouri Arkansas Tennessee Kentucky Illinois Indiana Michigan Ohio West Virginia DC Maryland Delaware New Jersey Vermont Rhode Island Connecticut New Hampshire Massachusetts Alaska Hawaii Pennsylvania U.S. Virgin Islands Puerto Rico Guam

CDC 11 ADDM Sites 2006-2010 (10+CDC) 16 ADDM Sites 2001-2006 (15 +CDC)

+

CDC Establishing a Network to Monitor ASDs and other DDs in the United States

Phase 1 Results

Summary of ADDM 2000, 2002, and Evaluation of ADDM Methods

Three reports of the ADDM Network ASD prevalence results are published in CDC’s MMWR Surveillance Summaries

Feb 9, 2007

www.cdc.gov/autism

Podcast on Autism

www2a.cdc.gov/podcasts/

SLIDE 9

9 Surveillance Year 2002 (8-year-olds born in 1994)

For the year 2002, from the 14 sites

representing approximately 10% of US 8-year-

ld children (born in 1994) – 2,685 children

were identified with an ASD.

The average prevalence across all 14 sites was

very similar to 2000 at 6.6 per 1,000.

There was also a range 3.3 (AL) to 10.6 (NJ)

per 1,000 children; however, for 12 of the 14 sites ASD prevalence was in a tighter range from 5.2 to 7.6 per 1,000.

Between 1:100 and 1:300 with an average of 1:150

children with ASD.

1 2 3 4 5 6 7 8 9 10 11 12 AL PA WI CO SC AZ NC MD AR WV MO UT GA NJ

Prevalence of ASD (per 1,000)

ADDM 2002 ASD Prevalence Previously Documented Classification Three reports of the ADDM Network ASD prevalence results are published in CDC’s MMWR Surveillance Summaries www.cdc.gov/autism

ADDM 2002 ASD Prevalence Results

For every 1 girl with ASD there was

approximately 3 to 7 boys affected.

5 of 14 sites identified more White non-

Hispanic children with ASD than Black non- Hispanic children.

ASD prevalence was lower among Hispanic

children across all sites.

Most children were receiving special education

services at age 8 years.

– between 31% (CO) and 74% (MD) with autism eligibility.

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10 ADDM ASD Early Delays and Age of Diagnosis

In both reports, the majority of children identified

with an ASD had documented concerns by a parent

r professional before 3 years of age, such as

concerns about the child’s language, social, or play development,

but the median age of earliest ASD diagnosis was

approximately 4 ½ to 5 ½ years.

Over the 2 year period from 2000 to 2002, this delay

in documented ASD diagnosis did not decline for the 6 sites included in both study years.

ASD Over 2 Time Points – 6 Sites

4 5 6 7 8 9 10 11

1998 2000 2002 2004 2006 2008

AZ SC M D WV GA NJ

ASDs Over 2 Time Points – 6 Sites
Prevalence was stable from 2000 to 2002 in four

sites, but increased in 2 sites (slightly in GA and significantly in WV).

While the stability of ASDs in 4 of the 6 sites is

encouraging, the increase in 2 sites is a concern.

We cannot yet say if ASDs are increasing overall,

but these reports provide important baseline information continued monitoring of ASD prevalence in these sites will help us answer that question starting with children born in the 1990’s.

SLIDE 11

11 Prevalence Conclusions

Results from the largest US multi-site

collaboration to monitor ASDs underscore that ASDs are conditions of urgent public health concern.

For the majority of communities represented, ASD

prevalence ranged from 5.2-7.6 per 1000 children

Some variation

– ASD prevalence significantly lower in 1 site (AL) and higher in 1 site (NJ).

– Average of 1 in 150 children

(range from about 1 in 100 to 1 in 300)
How many children in the U.S. have an ASD?

How many children in the U.S. have an ASD?

– Estimated: 560,000 children between 0-21 years

Next Steps for ADDM Network

8 sites completed study year 2004 for ASD

– 4 sites working on a joint trend report

11 Sites beginning study year 2006 for ASD

– 4 Sites for MR – 4 Sites for CP

Analyses using pooled datasets
Public use datasets
Next surveillance study year, 2008

Public Health Model

Συρϖειλλανχε Συρϖειλλανχε Συρϖειλλανχε Συρϖειλλανχε

Ωηο ισ αφφεχτεδ? Ωηο ισ αφφεχτεδ? Ωηο ισ αφφεχτεδ? Ωηο ισ αφφεχτεδ?

Ρεσεαρχη Ρεσεαρχη Ρεσεαρχη Ρεσεαρχη

Ωηο ισ ατ ρισκ? Ωηο ισ ατ ρισκ? Ωηο ισ ατ ρισκ? Ωηο ισ ατ ρισκ?

Πρεϖεντιον Πρεϖεντιον Πρεϖεντιον Πρεϖεντιον

Ηοω χαν ωε ρεδυχε ρισκ Ηοω χαν ωε ρεδυχε ρισκ Ηοω χαν ωε ρεδυχε ρισκ Ηοω χαν ωε ρεδυχε ρισκ ανδ ιµπαιρµεντ? ανδ ιµπαιρµεντ? ανδ ιµπαιρµεντ? ανδ ιµπαιρµεντ?

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12 Cause of Autism

Complexity of Identifying Causes

– Cause is likely to be CAUSES – Autism is likely to be AUTISMS

Complex Genetic and Environmental

Interactions

– What predisposes a child? – What exposures are necessary?

Research: Study to Explore Early Development (SEED)

Multi-state collaborative study to help identify factors that may put children at risk for autism spectrum disorders and other developmental disabilities. California, Colorado, Georgia, Maryland, North Carolina, Pennsylvania Approximately 2,700 children, ages 2 to 5, and their parents will be part of this study.

Research: Study to Explore Early Development (SEED)

Some areas to be included:

Infection and immune function, including autoimmunity Reproductive and hormonal features Gastrointestinal features Genetic features Investigation of the broader ASD phenotype Sociodemographic characteristics Substance use, hospitalizations and injuries, sleep disorders, and mercury exposure

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Interagency Autism Coordinating Committee (IACC)

Congress called for an IACC to improve

coordination of autism research among government and other organizations

IACC revising a National Research Plan for

autism.

www.nih/nimh/iacc.gov
CDC is a member of the IACC
Autism Speaks summarized Top 10 Research

Findings of 2007

Significant Needs

Improving Intervention

– Individualized intervention – Comprehensive treatment and coordination – Access to intervention – Rapid, effective, and safe methods to evaluate new treatments

Causes: Complex Genetic and Environmental

Interactions

– What predisposes a child? – What exposures are necessary?

Lifetime perspective

– Children with ASD will be adults with ASD

Improving Identification

– Early, accurate, makes a difference in access to intervention

Public Health Model

Συρϖειλλανχε Συρϖειλλανχε Συρϖειλλανχε Συρϖειλλανχε

Ωηο ισ αφφεχτεδ? Ωηο ισ αφφεχτεδ? Ωηο ισ αφφεχτεδ? Ωηο ισ αφφεχτεδ?

Ρεσεαρχη Ρεσεαρχη Ρεσεαρχη Ρεσεαρχη

Ωηο ισ ατ ρισκ? Ωηο ισ ατ ρισκ? Ωηο ισ ατ ρισκ? Ωηο ισ ατ ρισκ?

Πρεϖεντιον Πρεϖεντιον Πρεϖεντιον Πρεϖεντιον

Ηοω χαν ωε ρεδυχε ρισκ Ηοω χαν ωε ρεδυχε ρισκ Ηοω χαν ωε ρεδυχε ρισκ Ηοω χαν ωε ρεδυχε ρισκ ανδ ιµπαιρµεντ? ανδ ιµπαιρµεντ? ανδ ιµπαιρµεντ? ανδ ιµπαιρµεντ?

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Parent Struggle for Answers

Early signs may be subtle
Lack of physical signs
Inconsistent skills - strengths and weaknesses
Regression in some children
Parents often suspect their child

– has a hearing loss – was “too” good as a baby – has language delays

Parental Concerns

(Wiggins, Baio, Rice, 2006)

Recent study by CDC indicated most children with an ASD diagnosis had signs

f a developmental problem before the

age of 3, but average age of diagnosis was 5 years. Although we have much to learn about ASDs, there has been progress in the past 10 years. We do know that early identification and intervention can help a child develop skills, and that we need to do our best to appropriately plan for the significant support needs of people and families affected by ASDs.

www.cdc.gov/actearly CDC Prevention:

Learn the Signs. Act Early.

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www.cdc.gov/actearly Learn the Signs. Act Early.

CDC, our planners, and our presenters wish to disclose they have

no financial interest or other relationships with the manufacturers

f commercial products, suppliers of commercial services, or

commercial supporters. Presentations will not include any discussion of the unlabeled use of a product or a product under investigational use. CDC, our planners, and our presenters wish to disclose they have no financial interest or other relationships with the manufacturers

f commercial products, suppliers of commercial services, or

commercial supporters. Presentations will not include any discussion of the unlabeled use of a product or a product under investigational use. The findings and conclusions in this presentation are those of the author and do not necessarily represent the views of the Centers for Disease Control and Prevention

SLIDE 16

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American Academy of Pediatrics (AAP)
Autism Society of America (ASA)
Autism Speaks
First Signs
Organization for Autism Research (OAR)

…and many community champions!!!

American Academy of Pediatrics (AAP)
Autism Society of America (ASA)
Autism Speaks
First Signs
Organization for Autism Research (OAR)

…and many community champions!!!

Every child reaches his or her

full potential Every child reaches his or her full potential !" # !" #

Less than one-third (27%) believed their

colleagues are well-informed about developmental disorders

42% did not know autism can be diagnosed

as early as 18 months

59% said they do not have resources needed

to educate parents

Less than one-third (27%) believed their

colleagues are well-informed about developmental disorders

42% did not know autism can be diagnosed

as early as 18 months

59% said they do not have resources needed

to educate parents

SLIDE 17

17 !" !"

Lacked knowledge about

– Cognitive, emotional, and social development – Developmental delays

Recommend efforts communicate the urgency of

acting early when there is a concern about developmental delay

Clear consensus to avoid using language such as

“autism” and “ASD” in materials designed to reach all parents of young children

Lacked knowledge about

– Cognitive, emotional, and social development – Developmental delays

Recommend efforts communicate the urgency of

acting early when there is a concern about developmental delay

Clear consensus to avoid using language such as

“autism” and “ASD” in materials designed to reach all parents of young children

$% $%

Increase AWARENESS of developmental

milestones and early warning signs

Increase KNOWLEDGE in the benefits of

early action and early intervention

Increase parent-provider DIALOGUE on the

topic of developmental milestones and disorders

Increase EARLY ACTION on childhood

developmental disorders

Increase AWARENESS of developmental

milestones and early warning signs

Increase KNOWLEDGE in the benefits of

early action and early intervention

Increase parent-provider DIALOGUE on the

topic of developmental milestones and disorders

Increase EARLY ACTION on childhood

developmental disorders

&' &'

Health Care Professionals (HCPs)

– Pediatricians, family physicians, physician assistants, nurse practitioners, nurses, and others

Parents of Young Children

– Ages 4 and younger

Early Educators (EEs)

– Preschool teachers, day care providers, and others

Health Care Professionals (HCPs)

– Pediatricians, family physicians, physician assistants, nurse practitioners, nurses, and others

Parents of Young Children

– Ages 4 and younger

Early Educators (EEs)

– Preschool teachers, day care providers, and others

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Stand with 200 Informational Cards Stand with 200 Informational Cards

# !( # !(

Set of 15 Fact Sheets Set of 15 Fact Sheets Small Posters (3) Small Posters (3)

!( !(

Set of 8 Fact Sheets Set of 8 Fact Sheets Growth Chart (1) Growth Chart (1) Informational Card (1) Informational Card (1)

!( !(

CD-ROM CD-ROM Flyers for Parents (50) Flyers for Parents (50) Growth Charts (3) Growth Charts (3) Small Posters (3) Small Posters (3)

)

&)

)

&)

SLIDE 19

19 '! * '! *

www.cdc.gov/actearly

CDC and AAP screening guidelines
Coding information
AAP Autism Toolkit
M-CHAT template & instructions
Interactive Milestone Checklist
TV, Radio, & Print PSAs
“Template” Materials
Links to Partners, Resources

www.cdc.gov/actearly

CDC and AAP screening guidelines
Coding information
AAP Autism Toolkit
M-CHAT template & instructions
Interactive Milestone Checklist
TV, Radio, & Print PSAs
“Template” Materials
Links to Partners, Resources
+
+
Strategic placement

– PSAs, print ads, flyers, e-cards, weblinks, newsletter articles, etc.

Conference attendance (exhibit/present)
Opportunities offered by partners
Strategic placement

– PSAs, print ads, flyers, e-cards, weblinks, newsletter articles, etc.

Conference attendance (exhibit/present)
Opportunities offered by partners
+
+

SLIDE 20

20 ## ,-./' /0 123345 ## ,-./' /0 123345

678 298 768 38 98 :38 :98 238 298 738 798 638 698

+;
<
;=

;=

More parents look for developmental

milestones and know behaviors that suggest early signs of autism

More HCPs state they have resources to

educate parents

Fewer HCPs advocate a “wait and see”

approach when they suspect a child of having a developmental delay

More parents look for developmental

milestones and know behaviors that suggest early signs of autism

More HCPs state they have resources to

educate parents

Fewer HCPs advocate a “wait and see”

approach when they suspect a child of having a developmental delay

;= ;=

More parents and HCPs

Know the early warning signs of autism
Believe that early identification/intervention

can help and the best time is for children 2 years old and younger

Report talking with each other about child

development More parents and HCPs

Know the early warning signs of autism
Believe that early identification/intervention

can help and the best time is for children 2 years old and younger

Report talking with each other about child

development

SLIDE 21

21 ' '

Parents

Need more encouragement to ask questions

about child development

Need to know what to do if a physician says

“wait and see”

Need to understand how difficult diagnosis is

Parents

Need more encouragement to ask questions

about child development

Need to know what to do if a physician says

“wait and see”

Need to understand how difficult diagnosis is

' '

HCPs

Family Physicians and General

Practitioners need to know more about referral resources and that diagnosis can

ccur as early as 18 months
Need to use standardized screening

tools HCPs

Family Physicians and General

Practitioners need to know more about referral resources and that diagnosis can

ccur as early as 18 months
Need to use standardized screening

tools

' '

Need more

–Clarity –Specificity –Concordance in expectations

Need more

–Clarity –Specificity –Concordance in expectations

SLIDE 22

22 ' '

Screening, Identification, Referral,

Diagnosis, Eligibility determinations

What? How? When? Where? Who?
Internal and external discussions
Regional Meetings
Screening, Identification, Referral,

Diagnosis, Eligibility determinations

What? How? When? Where? Who?
Internal and external discussions
Regional Meetings

#; #;

Visit www.cdc.gov/actearly today!
Promote the campaign’s resources among

colleagues, providers, parents…

Distribute materials in your community
Participate in grassroots outreach efforts--

Speak about the campaign

Provide ideas about Act Early messages
Visit www.cdc.gov/actearly today!
Promote the campaign’s resources among

colleagues, providers, parents…

Distribute materials in your community
Participate in grassroots outreach efforts--

Speak about the campaign

Provide ideas about Act Early messages

&) >

//+ //+ )))?/

&) >

//+ //+ )))?/ )))?/

SLIDE 23

23 Autism Spectrum Disorders Autism Spectrum Disorders and the Role of Public Health and the Role of Public Health

Paul S. Carbone, MD, FAAP Paul S. Carbone, MD, FAAP Assistant Professor of Pediatrics Assistant Professor of Pediatrics University of Utah University of Utah

CDC, our planners, and our presenters wish to CDC, our planners, and our presenters wish to disclose they have no financial interest or other disclose they have no financial interest or other relationships with the manufacturers of commercial relationships with the manufacturers of commercial products, suppliers of commercial services, or products, suppliers of commercial services, or commercial supporters. Presentations will not commercial supporters. Presentations will not include any discussion of the unlabeled use of a include any discussion of the unlabeled use of a product or a product under investigational use. product or a product under investigational use.

The Role of Public Health For Children and The Role of Public Health For Children and Youth With Autism Spectrum Disorders Youth With Autism Spectrum Disorders

Population based surveillance of prevalence

Population based surveillance of prevalence

Advocacy and increased awareness

Advocacy and increased awareness

– – Educational campaigns highlighting early signs Educational campaigns highlighting early signs – – Evidence based information on vaccine safety Evidence based information on vaccine safety – – Promote inclusion, participation Promote inclusion, participation

Support community based service systems

Support community based service systems

– – Coordination of care Coordination of care – – Access to services Access to services – – Family centered services Family centered services

SLIDE 24

24

National Survey of Children's Health, 2003-4

Parents of Children With Parents of Children With Autism Spectrum Disorders Autism Spectrum Disorders

less satisfied with their medical home than

less satisfied with their medical home than

ther parents
ther parents (Liptak, 2006)

(Liptak, 2006)

less prevalent: family

less prevalent: family-

centered,

centered, comprehensive and coordinated care comprehensive and coordinated care (

(Brachlow Brachlow, , 2007) 2007)

“

“wait and see wait and see” ” approach often breeds approach often breeds parental discontent parental discontent (Howlin, 1999)

(Howlin, 1999)

high levels of parental stress

high levels of parental stress (

(Schieve Schieve, 2007) , 2007)

Dale et al., 2006

Parents of Children With ASDs Parents of Children With ASDs Why so stressed? Why so stressed?

Functional impairment / maladaptive

Functional impairment / maladaptive behaviors behaviors

Many options for treatment

Many options for treatment

Predictors of prognosis uncertain

Predictors of prognosis uncertain

Debate surrounding the cause

Debate surrounding the cause

Services are patchy

Services are patchy

Loss of family income

Loss of family income (Montes, 2008)

(Montes, 2008)

SLIDE 25

25

Murphy et al., 2006

A Vicious Cycle A Vicious Cycle

Caregiver Health And Well-being

Murphy et al., 2006

A Vicious Cycle A Vicious Cycle

Caregiver Health And Well-being Caregiver Effectiveness

Murphy et al., 2006

A Vicious Cycle A Vicious Cycle

Caregiver Health And Well-being Caregiver Effectiveness Child Health And Well-being

SLIDE 26

26

Murphy et al., 2006

A Vicious Cycle A Vicious Cycle

Caregiver Health And Well-being Caregiver Effectiveness Child Health And Well-being

Bayat, 2007

Evidence of Resilience in Evidence of Resilience in Families of Children With ASDs Families of Children With ASDs

Mobilization of resources

Mobilization of resources

Making positive meaning of disability

Making positive meaning of disability

Becoming united and closer as a family

Becoming united and closer as a family

Building friendships, developing new

Building friendships, developing new interests interests

Feelings of greater personal

Feelings of greater personal accomplishment in parenting accomplishment in parenting

Bayat, 2007

“ “My son is, as I have come to My son is, as I have come to realize, my teacher. He is realize, my teacher. He is teaching me patience, teaching me patience, acceptance, and how to see acceptance, and how to see how much I have, instead of how much I have, instead of what I am missing. what I am missing.” ”

SLIDE 27

27

Autism and the Medical Home, 2008

“ “I have challenges in meeting I have challenges in meeting the medical needs of my child the medical needs of my child and being taken seriously and being taken seriously about any of my concerns. about any of my concerns.” ”

Maternal and Child Health Bureau

Definition of family Definition of family-

centered services

centered services

Partnership is the foundation Partnership is the foundation

1. 1. Families and Families and professionals professionals work together work together in the in the best interest of the child best interest of the child and family and family 2. 2. Everyone Everyone respects respects the skills and expertise brought the skills and expertise brought to the relationship to the relationship 3. 3. Trust Trust is acknowledged as fundamental is acknowledged as fundamental 4. 4. Communication Communication and and information sharing information sharing are are

pen and objective
pen and objective

5. 5. Participants make Participants make decisions together decisions together 6. 6. There is a There is a willingness to willingness to negotiate negotiate

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SLIDE 28

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Maternal and Child Health Bureau, 2000

FAMILY FAMILY

Medical Home Provider and Staff

School / EIP

Special Education

Teacher

OT/PT/Speech

Therapists

Psychologist

Community Support

Parent Groups
Recreational Programs
Respite

Title V

CSHCN Clinics

Funding

Insurers
Medicaid
SSI

Medical Specialists

Developmental Pediatrician
Child Neurologist
Geneticist
Child Psychiatrist

The child with autism or other developmental disability

Transition

Adult health care
Work

Maternal and Child Health Bureau, 2000

FAMILY FAMILY

Medical Home Provider and Staff

School / EIP

Special Education

Teacher

OT/PT/Speech

Therapists

Psychologist

Community Support

Parent Groups
Recreational Programs
Respite

Title V

CSHCN Clinics

Funding

Insurers
Medicaid
SSI

Medical Specialists

Developmental Pediatrician
Child Neurologist
Geneticist
Child Psychiatrist

The child with autism or other developmental disability

Transition

Adult health care
Work

Maternal and Child Health Bureau, 2000

FAMILY FAMILY

Medical Home Provider Medical Home Provider and Staff and Staff

School / EIP

Special Education

Teacher

OT/PT/Speech

Therapists

Psychologist

Community Support

Parent Groups
Recreational Programs
Respite

Title V

CSHCN Clinics

Funding

Insurers
Medicaid
SSI

Medical Specialists

Developmental Pediatrician
Child Neurologist
Geneticist
Child Psychiatrist

The child with autism or other developmental disability

Transition

Adult health care
Work

SLIDE 29

29

Maternal and Child Health Bureau, 2000

FAMILY FAMILY

Medical Home Provider Medical Home Provider and Staff and Staff

School / EIP

Special Education

Teacher

OT/PT/Speech

Therapists

Psychologist

Community Support

Parent Groups
Recreational Programs
Respite

Title V

CSHCN Clinics

Funding

Insurers
Medicaid
SSI

Medical Specialists

Developmental Pediatrician
Child Neurologist
Geneticist
Child Psychiatrist

The child with autism or other developmental disability

Transition

Adult health care
Work

Maternal and Child Health Bureau, 2000

FAMILY FAMILY

Medical Home Provider Medical Home Provider and Staff and Staff

School / EIP

Special Education

Teacher

OT/PT/Speech

Therapists

Psychologist

Community Support

Parent Groups
Recreational Programs
Respite

Title V

CSHCN Clinics

Funding

Insurers
Medicaid
SSI

Medical Specialists

Developmental Pediatrician
Child Neurologist
Geneticist
Child Psychiatrist

The child with autism or other developmental disability

Transition

Adult health care
Work

Maternal and Child Health Bureau, 2000

FAMILY FAMILY

Medical Home Provider Medical Home Provider and Staff and Staff

School / EIP

Special Education

Teacher

OT/PT/Speech

Therapists

Psychologist

Community Support

Parent Groups
Recreational Programs
Respite

Title V

CSHCN Clinics

Funding

Insurers
Medicaid
SSI

Medical Specialists

Developmental Pediatrician
Child Neurologist
Geneticist
Child Psychiatrist

The child with autism or other developmental disability

Transition

Adult health care
Work

SLIDE 30

30

How are we doing? How are we doing?

National Survey of Children with Special Health Care Needs National Survey of Children with Special Health Care Needs

41.2 89.1 63.8 62 47.1 57.4 5.8 74.3 51.6 59.6 52.6 57.5 10 20 30 40 50 60 70 80 90 100

Transition Community-Based Services Developmental Screening Adequate Insurance Medical Home Family Centered Services Percent of CSHCN who Achieved Outcome

2001 2005/2006

National Survey of Children with Special Health Care Needs

How are we doing? How are we doing? Themes Themes

Lower functioning children and children from

Lower functioning children and children from lower income families are less likely to meet lower income families are less likely to meet criteria for achieving the outcomes criteria for achieving the outcomes

Continued improvement in transition services

Continued improvement in transition services are needed are needed

More support for the medical home is needed

More support for the medical home is needed

– – Care for children with ASDs less family centered, Care for children with ASDs less family centered, comprehensive and coordinated comprehensive and coordinated (National Survey of

(National Survey of Children Children’ ’s Health) s Health)

Autism has exposed our Autism has exposed our weaknesses weaknesses… …

Management requires collaboration

Management requires collaboration across disciplines across disciplines

We are not accustomed to the

We are not accustomed to the interdisciplinary model of caring for interdisciplinary model of caring for patients patients

Our roles in the coordination of care are

Our roles in the coordination of care are not well defined not well defined

SLIDE 31

31 Care that is not coordinated Care that is not coordinated results in results in… …

Mixed messages from team members

Mixed messages from team members

Different eligibilities

Different eligibilities

Duplication/ gaps in services

Duplication/ gaps in services

Misunderstandings

Misunderstandings

Frustrated providers

Frustrated providers

Frustrated caregivers

Frustrated caregivers

Autism and the Medical Home, 2008

“ “These are often high need These are often high need children and they wear out children and they wear out their parents and people their parents and people working with them. I do what I working with them. I do what I can but many times feel that can but many times feel that the family needs so much the family needs so much more. more.” ”

$0*240 $0*240 50(0! 50(0! "6 "6

SLIDE 32

32

Public Health in Action

Public Health in Action Utah Examples Utah Examples

Population based surveillance of prevalence

Population based surveillance of prevalence

– – Collaboration between public health, academic Collaboration between public health, academic center and education center and education

Support the Medical Home

Support the Medical Home

– – Utah MedHome Portal Utah MedHome Portal

Developing systems of service for frontier

Developing systems of service for frontier communities communities

– – CSHCN Satellite Clinics CSHCN Satellite Clinics

www.medhomeportal.org www.medhomeportal.org

Web site that supports providers and families of

Web site that supports providers and families of CYSHCN in partnering in the medical home model CYSHCN in partnering in the medical home model with information with information

– – about the care and management of childhood disabilities about the care and management of childhood disabilities – – about local and national resources for information, care, and about local and national resources for information, care, and support support – – Optimizing outcomes for CYSHCN Optimizing outcomes for CYSHCN

Extensive

Extensive

– – Over 420 content pages, 800 links to other sites, 600 Over 420 content pages, 800 links to other sites, 600 scientific citations, information on over 2200 community scientific citations, information on over 2200 community services and resou services and resources in Utah rces in Utah

Popular resource for families and providers

Popular resource for families and providers

– – over 6100 visits per month

ver 6100 visits per month

SLIDE 33

33 Utah MedHome Portal Utah MedHome Portal

Partners Partners

Department of Pediatrics, University of Utah

Department of Pediatrics, University of Utah

Bureau of Children with Special Health Care

Bureau of Children with Special Health Care Needs, Ut Needs, Utah Department of Health ah Department of Health

Utah Family Voices

Utah Family Voices

Maternal & Child Health Bureau, Department

Maternal & Child Health Bureau, Department

f Health & Human Services
f Health & Human Services
University of Oklahoma Health Sciences

University of Oklahoma Health Sciences Center Center

Bureau of Special Health Care Needs,

Bureau of Special Health Care Needs, Missouri Department of Health Missouri Department of Health

Utah Department of Health Utah Department of Health CSHCN Satellite Clinics CSHCN Satellite Clinics

Interdisciplinary team, nine sites

Interdisciplinary team, nine sites

Comprehensive assessment and case

Comprehensive assessment and case management services for children with special management services for children with special health care needs health care needs

Coordinate the delivery of services with the

Coordinate the delivery of services with the medical home and local agencies medical home and local agencies

Autism: diagnostic testing, treatment of

Autism: diagnostic testing, treatment of associated conditions associated conditions

SLIDE 34

34 Who Benefits Who Benefits… …

Families of children

Families of children with ASDs with ASDs

Children with other

Children with other developmental developmental disabilities disabilities

Everything I ever learned I Everything I ever learned I learned from my patients with learned from my patients with autism autism… …

Change can be scary.

Change can be scary.

Interaction with new people can be

Interaction with new people can be scary. scary.

You can do it.

You can do it.

Thank You Thank You

paul.carbone@hsc.utah.edu paul.carbone@hsc.utah.edu

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35

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