ulrich spharc slides and presentation notes

“You Okay?”:A Parent’s Look at Transition

Mary E. Ulrich Ed.D.368 Walnut Ln. Mason, OH 45040

513-545-0382MaryE.Ulrich1@gmail.com

“The real voyage of discovery consists not in seeking new lands but in seeing with new eyes.” Proust

The New Landscape• We all need transition plans. • We all need great doctors, health insurance.• We all need skills in self-determination, self-advocacy.• We all need circles of support and mentors—plus, a swat

team with specialized information and skills to trouble-shoot and brainstorm.

• We all need to see each person is unique, no one is perfect.• We all need access to inclusive medical services in our

communities—NOT segregated, "handicapped only”.• IDEA and the Transition literature of the last 25 years is a

valuable source of information for the medical community. • We all need to keep learning and talking to each other.

Our Medical Home

• HMO for entire family• Private Insurance• Natural Proportion• Caring, Competent MDs• Specialists as needed• Communication• Problem-solving

MUTUAL BENEFIT

PEDIATRICIANGood Patients:

follow-through respectfulpaperwork shared resource information

PARENTGood Doctor:

advice emotional supportreferrals w/neededshared resource information

Functional Curriculum

Transition ServicesIDEA 2004

• `(34) TRANSITION SERVICES- The term `transition services' means a coordinated set of activities for a child with a disability (Age 16) that--

• `(A) is designed to be within a results-oriented process, that is focused on improving the academic and functional achievement of the child with a disability to facilitate the child's movement from school to post-school activities, including post-secondary education, vocational education, integrated employment (including supported employment), continuing and adult education, adult services, independent living, or community participation;

• `(B) is based on the individual child's needs, taking into account the child's strengths, preferences, and interests; and

• `(C) includes instruction, related services, community experiences, the development of employment and other post-school adult living objectives, and, when appropriate, acquisition of daily living skills and functional vocational evaluation. (H.R. 1350, Sec. 602[34])

Person Centered Planning

AaronFamily/FriendsDoctors, therapists, Teacher, Service Coordinator

Current and Future EnvironmentsCurriculum Current Transition Future

Domestic Domain Parent’s Home Parent’s Home(Medicaid Waiver)

Supported Living

Vocational Domain School Work Experiences in Community

Supported Employment

Community Domain(Medical)

HMOPrivate Insurance

HMOPrivate/ Medicaid

Adult MDsMedicaid/Medicare

What is the difference?

Lessons Learned

Bridges to Adult Services

PediatricClinic/Medical

Cards

•Adult Clinic/Medical Cards•Community MDs/Medical Cards

Pediatric/ Private

Insurance

•Adult Community MDs/ Private Insurance•Adult Community MDs/ Medical Cards

Adult Medical Physician

He/She knows who is the patient and respects their individuality.

He/She is knowledgeable about autism and people with developmental disabilities. He/She has a network for support and makes referral to specialists who are also knowledgeable about people with disabilities.

He/She is always learning and teaching. He/She mentors university students and other local medical professionals. He presents at local and national conferences. He keeps up with the changes in the professional and local community.

• His/Her staff is caring, kind and knowledgeable.

• He/She takes both private and Medicaid/Medicare insurance. Which shows they care about ALL PEOPLE. This is a true definition of inclusion.

• He/She takes a personal interest in his patient’s lives.

• He/She is an advocate and willing to speak on their behalf.

Aaron with his housemates.

Aaron is now 35 . He has developed some secondary behavior disabilities because of the lack of quality day and residential programs. But he is a survivor. Fortunately he now has an excellent doctor. He is happy and well loved.

Best medicine: As normal a life as possible

Resources:

Donnellan, A. Hill, D. Leary, M. Rethinking Autism: Implications of Sensory and Movement Differences in Disability Studies Quarterly Vol. 30, No 1 (2010)

http://www.dsq-sds.org/article/view/1060/1225This article suggests it is time for the medical

community to consider that autism may be a neurological motor problem (like Tourette’s, Alzheimer's...).

I am sharing my personal story and family pictures with you for educational purposes and in the hopes they will

better tell our story. I ask that you respect our family and do not copy or use the pictures in any other

publication or presentation.

Thank you. Mary E. Ulrich