Appendix A

That she is getting the help she needs.

I really liked how everyone addressed our son and talked to him about his care.

I already had much of the information that was provided, but thought that it was helpful to have them re-evaluate my son.

There was enough time to get all of my questions answered.

The group was caring, was able to get right to the point.

Overall it was wonderful.

Staff gave information and recommendations that will be helpful in planning for transition.

Simply knowing that there are friendly resources and sources of information. We are happy with the services we receive and know that we will always be treated well and receive information if and when necessary.

That I was seen by so many doctors.

Liked better than CP clinic. Liked having separate evaluations. I shared a copy with my teachers.

Actually talked to son and included him and he is excited about going back.

The staff.

Most of the people associated with the clinic were kind and helpful. The Consumer/Family Advocate, in particular, was personable and helped by sending literature that was informative.

They covered all areas. We really didn't know what to expect, but we were very impressed!

The resource book.

Discussing youth's needs. Not feeling like a lost parent or bad parent. My son felt very good after session. Listening to our problems.

Talking to people who cared for me.

None that he can explain or think of.

Students need to introduce themselves.

No need to improve.

Some of the medical information was hard to understand.

Nothing.

Explain what is going to happen. Give me the report as well as the staff.

Not so early in the morning.

Would like them to get him a lap top.

We were unhappy with one of the Transition team members because of his line of questions and a comment he made.

Have the results and findings of the clinic given to primary provider quicker so changes can be implemented.

Get more info to the parents somehow.

Youth needs somebody to hear them.

Help other kids with special needs at school.

The notebook was great and all the concerns of the family were addressed.

I did not attend the clinic with my family but was very impressed with the thoroughness when I received the report and with the follow-up after the family came home. I think this is awesome to help our kiddos go into the adult world. Thank you for what you are doing and keep up the good work.

Informing the family of the need and availability of their future health care decisions.

The holistic and multi-disciplinary team approach to the youth’s medical, social, vocational, and educational needs. I was glad to see pharmacology review the medications and enter into a discussion with the parents. The handouts and resources gathered ahead of time were impressive. I did visit with the parent after the Clinic. She shared that she was working on the “workbook” that was given her. It was specific to the youth and his needs.

The college information sent to the family was probably most helpful. This family is very self directed.

The medical recommendations offered were very helpful. I'm looking forward to the written report. For clients who are getting ready to enter DD services and don't have a Services Coordinator I think the other recommendations will be very helpful.

Not to have the psychiatrist first. I think the family would have been more comfortable with him later.

N/A at this time.

Would there be any way to shorten the time the family had to spend at the clinic? It was a long time for the youth, who has autism, to spend in strange surroundings. He did well. Scheduling clinics on non school or work days might have helped the family as well.

The family was very unhappy with one of the transition team members due to the line of questions asked and one comment that was made.

The only part of the clinic I didn't care for was the interview portion with the different clinicians, when the one-way mirror was used. I understand that some persons may be more comfortable in a smaller group and may not want to repeat answers, but I didn't feel comfortable knowing.

Contact Information.

Just the fact that it is a comprehensive list of resources that I can readily access.

Resource section and the transition guide for teens and parents.

Training medical students.

The resources.

Hard to narrow down, but probably the listing of services available and their contact information.

Excellent resource for background information regarding all of the needs of these kids and problems that occur when transition does not go smoothly. The timeline is very helpful to get patients/families/physicians thinking about and preparing for the future. The list of resources is very helpful. (without the help of a social worker, I would have no other way of knowing that these resources are available).

The transition health care assessment gives a good idea of functional status and concerns.

One Page Portable Medical Template - excellent, concise overall history. I like the info at the top of the sample that includes intelligence level, communication issues/etc. , as well as, the medical info. Overall excellent resources for personal training in this area, and for training residents.

Seeing the process of care with multiple providers-
Coordinated.

The overall orientation. The topic wasn't something I normally think about, so the orientation was helpful.

The huge list of resources!

To see all the resources available and to gain some knowledge about the transition process.

Experiencing the significant outreach capabilities of the program and seeing how it all interfaced.

Seeing how it works and meeting the people involved-which removes basic unknowns that could impair referral.

Seeing how the multidisciplinary approach works so well for these kids, and seeing what it all involved in the transition. I liked the summary "Youth Transition Plan". This would be very helpful to me as a provider when taking over care of the patients. One thing that would be helpful for me in the "Youth

Transition Plan" would be a little information about the individual's life expectancy/disease progression if applicable. And PT/OT did not seem to be very involved in the process.

Some sort of social work support would be very helpful for the providers and patients!

Thanks for the opportunity to be involved and learn about this important process.

Executive summary for primary care doctor; Hot list of phone numbers.

Identifying autism earlier and Aspberger's.

Info on state assistance programs (definitions/purposes/qualifiers).

Updates on the clinic, services, etc., as they become available. Thanks! Great Job!

Periodic lectures to the department for continued reinforcement.