Four of the five counties are now underway Fifth county is re-grouping What do we know about the children, families

and professionals who have been through the process?◦ Results from the enhanced evaluation Psychoeducational tools, medical eval & diagnosis◦ Perceptions of families Post-evaluation surveys◦ Perceptions of the diagnostic partners Time, usefulness of tools, confidence in diagnosis

We are not a research study: Some data holes!

Number of children evaluated 23Gender 15 M 8 FChronological age

Range 17-91 monthsUnder 36 months 10

37-48 months 649-60 months 5

> 60 months 2

Diagnoses Number %Autism 6 26%

PDD-NOS 3 13%Aspergers 1 4%

TOTAL ASD 10 43%Language Delay/Disorder 6 26%

Language + Behavior 3 13%Global Delay 3 13%

No Clinical Dx 1 4%

Diagnosis x AgeAge ASD Other

Under 36 months 5 537-48 months 1 549-60 months 3 2

> 60 months 1 1

RBI priorities◦ Toileting and dressing◦ Feeding/mealtime◦ Playtime: entertaining self

FQOL: Not as “sensitive” as RBI Only 6 families scored any item as

“Dissatisfied” Outside family support, free time, medical/

dental care

Two surveys:

◦ Family-Centered Practices Scale following the

psychoeducational evaluation

◦ Satisfaction Survey following the medical

evaluation/diagnosis

Responses from 17 of the 23 families

Never Very Little

Some of the time

Most of the time

All of the

timeReally listened to my concerns/requests 1 2 3 4 5Treated me with dignity and respect 1 2 3 4 5Saw us in a positive way 1 2 3 4 5Were sensitive to our cultural/ethnic background

1 2 3 4 5

Understood our situation 1 2 3 4 5Listened for our strengths and interests 1 2 3 4 5Helped me learn more about my child’s development

1 2 3 4 5

Helped me be an active part of the eval 1 2 3 4 5Recognized the good things I do as parent 1 2 3 4 5Were flexible and responsive 1 2 3 4 5Helped me figure out what to do next 1 2 3 4 5

*Adapted with permission from Family-Centered Practices Scale,Dunst & Trivette, 2004

With one exception,

“I am very confused on why 7 others felt he was on autism spectrum and these 3 people do not see it. All 7 have spent several hours a month with him and they did not spend much time with him.”

How satisfied are you with . . . Not at all

Some what

Very

How the evaluations were explained to you 1 2 3 4 5How the educational team and the physician listened to you

1 2 3 4 5

How the educational team and the physician made you feel like an equal member of the team

1 2 3 4 5

How their findings were explained to you 1 2 3 4 5How your questions were answered 1 2 3 4 5The diagnosis itself (e.g., language delay, autism)

1 2 3 4 5

The recommendations that were shared with you

1 2 3 4 5

Where the evaluation process was completed 1 2 3 4 5How long it took to complete the evaluation process

1 2 3 4 5

If you had to go through this evaluation process again, would you?

1 2 3 4 5

Would you be willing to recommend the process to a friend?

1 2 3 4 5

Age First Concerned

Age When Shared Concern

What happened? Age at Dx

12 12 Ped referred to B-3 236 24 Ped referred to Dx Team 2713 20 Ped referred to B-3 2824 26 Referred to local agency 4012 12 Ped told me to wait it out 5321 26 Referred to B-3 5624 54 No info from parent 68

“I feel that everything that needed discussed was. Thank you all!!”

“I find this to be quite hopeful and helpful to me.”

“Everything was extremely satisfactory as far as personnel, time and location. We’re very thankful.”

Psychoeducational Partners (18/23 surveys)◦ Evaluation typically took 2-2.5 hours◦ Standardized tool, RBI and ADOS seen as very helpful for

both diagnosis and intervention recommendations◦ FQOL not helpful◦ VERY confident in their results (5 on 5-pt scale)

MD Partners (20/23 surveys)◦ Length of evaluation depended on setting (1-3 hrs)◦ Used results of tools (except FQOL) plus history plus DSM-

IV ◦ VERY confident in their results almost all the time (18/20) –

in two cases, scheduled child for further medical evaluation and follow-up appointment

Regarding the RBI:◦ Seen as valuable as the ADOS, but for different reasons◦ “It’s so personal and so vivid.”◦ “I’m not going into the ADOS blind.”◦ “How else would you know that the child gets up and

watches cartoons all day without the RBI?”◦ “The parent is right next me looking at the computer . . .

You just can’t believe the look on these families’ faces.”◦ “I read every page before I see the child.” (the MD Partner!!)

Regarding the ADOS:◦ “The manual is my Bible.”◦ “A lot of stuff to take in . . . A lot of stuff to write down.”◦ “I’m getting more comfortable every time.”◦ Advice: “Score it right away!”

“It’s fun.” “This has been fabulous for families. They

don’t have to travel.” “We’re doing better all the time. The first

ones were shaky as we were learning the tools.”

“We feel that taking the time to be together and DISCUSS is invaluable.”

“Families have had a weight lifted off their shoulders.”