Ulrich Spharc Slides And Presentation Notes
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This is a webinar presentation I did with Patti Hackett and Dr. Tim Freeman for Dept. of Maternal and Child Health.
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Ulrich Spharc Slides And Presentation Notes
- 1. “You Okay?”:A Parent’s Look at Transition Mary E. Ulrich Ed.D. 368 Walnut Ln. Mason, OH 45040 513-545-0382 MaryE.Ulrich1@gmail.com
- 2. “The real voyage of discovery consists not in seeking new lands but in seeing with new eyes.” Proust
- 3. 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.
- 5. Our Medical Home HMO for entire family Private Insurance Natural Proportion Caring, Competent MDs Specialists as needed Communication Problem-solving
- 6. MUTUAL BENEFIT PEDIATRICIAN Good Patients: follow-through respectful paperwork shared resource information PARENT Good Doctor: advice emotional support referrals w/needed shared resource information
- 8. 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])
- 10. Current and Future Environments
- 11. What is the difference?
- 13. Lessons Learned
- 14. Bridges to Adult Services
- 15. 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.
- 16. 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.
- 17. Aaron with his housemates.
- 18. 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.
- 19. Best medicine: As normal a life as possible
- 20. 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/1060/1225 This article suggests it is time for the medical community to consider that autism may be a neurological motor problem (like Tourette’s, Alzheimer's...).
- 21. 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
Editor's Notes
- Thank you for inviting me.You okay? I chose this title, because if you knew my son Aaron, you would hear him ask this question at least 20 times every couple minutes--I think it’s Aaron’s way to let us know he is present, and to calm himself. Maybe he’s telling us that in his next life, he wants to be in Health Services. “You okay?”
- “The real voyage of discovery consists NOT in seeking new lands—but in seeing with new eyes.”Patti shared some excellent tools she used to empower Glen and other families in making their own health care choices.These would be helpful tools for ALL Families and ALL Children, not just children with disabilities.My message is one of inclusion: we don’t need to seek and develop transition plans for a new land of medical services or “Disability World”--as some call it.We DO need a new health care landscape that brings inclusive medical services to ALL people. Rather than developing a handicapped-only scarcity model, we need to think about building capacity in the whole system.We professionals often use reductionist thinking to isolate, and then address that one problem. My challenge to you is to measure your success of “seamless” transitions against the experiences of people who have the label of “normal.” Aaron and the others with severe challenges only need a coupleextra layers of support in the regular system. Their doctors might also need a couple extra layers of support. There are many misconceptions about inclusion, it’s definition:“Inclusion is a paradigm for thinking and acting in ways that include ALL person in a society where diversity is becoming the norm rather than the exception” (Stainback & Stainback, 1996).Inclusion is a set of values and way of thinking which could be useful in shaping the medical health landscape.
- I’m sure there are a couple more “We all need...”
- This is the moment my husband introducedAaron to his younger brother Tommy. This was a transformational moment in my life as I faced the challenge of being a good mom. I didn’t call it transition planning, or “building an inclusive community where everyone belonged” but even as Tommy was one day old and Aaron was 18 months old, I was already planning how I could help my children grow to be happy, independent, healthy adults, who would make a difference. Tommy had the label of “normal” and grew up to also be called-- son, brother, engineer, husband, and now—dad... (yippee, I’m a grandma.) In order to get services, Aaron grew up with the labels of “Developmental Disability and autism. But his more important labels were son, brother, uncle, friend, neighbor...We learned that to survive, we needed to not only see with new eyes, but we would need every person we met to see with new eyes—the eyes of possibility, the eyes of belonging, the eyes of inclusion.
- Here is our story:For 25 years, our family’s medical needs were served by the our HMO with my husband’s private insurance as a teacher in Cincinnati Public Schools. Because the HMO was in our community, we often saw friends, neighbors, and other teachers with their kids. It was an inclusive environment, a natural proportion, about 10 % of the patients were people with disabilities. Aaron and Tommy were very healthy. The boys only had three pediatricians in their entire lives.When we noticed Aaron’s slow development, our pediatrician referred Aaron to specialists at our local UAF where the neurologist gave us an official diagnosis. We then took Aaron to the NIH in Washington for a second opinion. That doctor also said there was nothing medically they could do. But, this was in 1975 and he told us about the new Education of All Handicapped Children Act. Because our HMO served both children and adults, I assumed when Aaron and Tommy moved to the Adult Drs. They would be able to JUST GO across the hall (okay, don’t laugh—I was naïve--Though this could have happened for Tommy when he got insurance from his employer.)
- Like many parents, as soon as I learned I was pregnant, I started wondering what my child would be like as an adult. Many people think parents are reluctant to think about the future. I would argue parents think about the future all the time, and the transition begins the first time they meet the pediatrician.Through the years we developed a trusting relationship with our pediatrician. Of course, I don’t know her side of the story, but I like to think it was mutually beneficial.We were good patients, she was a good doctor.We followed through when she suggested a treatment or course of action....We respected her time, only called when needed, were prompt for appointments.... We kept our insurance up-to-date....Because the information on autism and best educational practice was changing by the minute, we exchanged articles and conference information. I referred patients to her, she referred parents to me at the Parent Information Center.We trusted and respected each other’s roles in Aaron and Tommy’s life.
- School is all about preparing for adult life. Starting at age 5, Aaron had a community based curriculum in school which looked at the domestic, vocational, and community domains with the goal of learning to be as independent in his an adult life as possible. Medical services, self-care and hygiene are part of each of the domains, but specifically addressed in the Community domain. Transition legislation begins at age 16, Patti gave several examples in her presentation of how she and Glen began to trade responsibilities for making medical appointments, etc. This is an example of the kinds of skills Aaron and others could be taught.We could have put more emphasis on medical health skills in Aaron’s IEP.
- Aaron’s Person Centered Planning is an ecological assessment tool. (also called MAPs, PATH, Circle of Friends...)Thinking in Systems could also be one of the answers for medical transitions. Medical Professionals can be included in the Person Centered Planning process.
- By looking at Aaron’s Current and Future Environments, we were able to create IEP goals which directly related to the next environment.Health, Safety, and Self-help skills are in every curriculum domain. Medical Services, Doctor visits... were taught in the “community domain.” We have 30 years of transition research, you can build on the curriculum and classes that already exist in the schools. Currently the Congress is holding hearings on the reauthorization of the Elementary and Secondary Education Act—I would think this committee could testify about the need for All students to have a seamless transition to adult medical services—that inclusion thing again. PS.Aaron earned his own Medicare eligibility in his vocational jobs in high school.
- I know the medical and education fields don’t always agree or value each other’s perspective. But there are legal mandates about transition in IDEA (Individuals with Disabilities Education Act). Further, there is a substantial body of research and over 25 years of successes and failures. This presentation inspired me to start pulling some slides together. If you email me, I’ll send them to you. I beg you to not reinvent the wheel. Parents are going to talk about Person Centered Planning, MAPS, functional curriculum, self-determination. It is in your best interest to learn about this, not only because your credibility is at stake, but the 25 years of successes and failures in the schools could be a key foundation for the transition solution for adult medical services. Back to the above picture? The differences--Aaron needed an extra support person to help him. (Well, he also refused to wear the uncomfortable, dumb looking hat.) But that extra layer of support has made all the difference in Aaron’s life--whether it is his special education teacher, service coordinator, or whether it is the medical specialist who is knowledgeable about autism and DD. We all need mentors and extra support.In the handouts, I’ve included an open letter I wrote to Aaron called “On Graduation.” Many people have told me it helped them make better sense of the transition from childhood to adult life.There were 600 graduates in Aaron’s senior class. Several students, including the class Valedictorian, told me they chose to go into the medical field because of their experiences with Aaron. My dream that Aaron make a difference in people’s lives has come true in ways I never imagined.
- The reason I went into such detail about our wonderful experience with our Pediatrician is because that win-win situation built on trust was exactly what we were looking for in Adult Services.“For many years, you’ve been preparing to enter uncharted waters—and today you walk the plank.”The graduates today are the first generation of people with disabilities who received a quality education. It is indeed a time of uncharted waters.In hindsight, I could have solved most of my transition issues if I had known they were going to be issues before hand.
- During the health care debate, I heard someone talking about how for many private medical providers and insurance companies the paradigm has shifted from shared risk--to low risk--to no risk. For us, the biggest lessons on moving into the adult services were:The power of insurance:When Aaron moved from private insurance to the medical card, we learned he could no longer go to our HMO. When Tom retired, our HMO also refused to accept the retired teachers. It seems they should add to this sign: “Accepting new patients who are young, healthy, and have private insurance.” When Aaron got his Medicaid card, we discovered he could get speech therapy, because federal programs cannot discriminate against a person with a disability—our HMO said, “communication, fine and gross motor issues were part of having autism” and denied him therapy. There are many issues about whether the person lives with the parents, can be included on the parent’s insurance after age 22 and a diploma, what happens when they move to a supported living environment....
- Read slide2. The power of prejudice and discrimination:We also learnedabout the attitudes and prejudice against people with disabilities. There were few doctors who took medical cards, even fewer who were willing to take people with the labels of autism and DD. We had some terrible experiences where we were publically rejected and ushered out into the streets. Here I thought I was this great advocate for Aaron, and all I could do was cry. But after you cry—the bottom line is your child still needs medical services. I’m guessing the doctor’s reasons for resistance were the same as when we tried to enter public schools: 1. Prejudice and Discrimination- they have never been around p/disabilities. 2. They don’t feel they have the training, expertise.... 3. They don’t feel they have the support. 4. They are busy with the people they serve. 5. They don’t like the complexity of dealing with multiple agencies/paperwork/parents 6. They are afraid they will do the wrong thing and hurt someone. 7. This is not what they signed up for when they went into this profession. 8. They just don’t want to.
- Fortunately, one of my friends recommended Dr. Freeman. He is going to be presenting later today.I made the slide generic to apply to any adult medical physician, but it is my experience with Dr. Freeman that determined each point.Dr. Freeman always says hello to Aaron and gives him direct eye contact. He knows Aaron is the patient and respects his individuality. i.e. Aaron trades baseball cards with the doctor while he is talking. Because Aaron doesn’t speak with words, this is a way to share communication with him. Aaron is allowed to sit in a chair instead of climbing up on the examination table.He is the sort of Doctor who has more knowledge about autism and people with developmental disabilities than anyone I know. If Aaron needs a referral to a specialist he not only gets it—the chosen professional cares and is knowledgeable about people with disabilities. i.e. Aaron sang ‘Ole McDonald with the nurses through a colonoscopy—they didn’t even have to put him all the way under.He is always learning and teaching. He 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 staff is caring and kind. (Aaron is in love with Cynthia, his receptionist)He takes both private and Medicaid/Medicare insurance. Which tells me they care about ALL PEOPLE. This is a true definition of inclusion.He takes a personal interest in his patient’s lives. i.e. The Doctor went to a local Arc meeting which honored one of his patients.He is an advocate. i.e. joins community advocacy groups.
- He is an advocate. He intervenes with direct support staff when they are not following directions, want unreasonable paperwork, ask for things which might make their job easier-but are not in Aaron’s best interest. i.e. The staff at both Aaron’s day hab. and residence wanted to put Aaron in diapers. The Doctor said they would have to meet with him to discuss this, so far they have backed down.After being so rejected by the other doctors, we feel we are blessed to have Dr. Freeman in Aaron’s life.Working with the direct care staff in both the residential and day programs was another surprise. They are mostly kind, generous souls who are willing to little more than minimum wage. Their job requirements ask that they have a high school diploma, or GED. They usually have few resources. In social and community status, they are often not much different than the people they are serving.This was another surprise in our transition plan.
- 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.
- Now everyone say, “You Okay!” In summary: There are some issues in transition which are unique to the medical field. (insurance, multiple sub-specialities, life-long issues, secondary disabilities/aging issues.)There are some issues which are not. (resistance to change, attitudes, never enough knowledge, never enough funding or training.)Use your new eyes and see the big picture. (inclusion, individuals, families, life-long issues)Don’t reinvent the wheel. (education transition experience)You have lots of allies (self-advocates, medical professionals, parents, IDEA, service coordinators, teachers,)
- I am sharing my personal story and family pictures with you in the hopes that they will better tell our story. I ask that you not copy or use the pictures in any other publication or presentation. Thank you. Mary E. Ulrich