1. Introduction

Program Background

The Nebraska Department of Health and Human Services (HHS) received a grant from the Centers for Medicare and Medicaid Services (CMS) beginning 10/1/04 to improve the medical transition process for young adults with special health care needs who are preparing to move from pediatric to adult-based health care. It was anticipated that the outcome of this project would be an amendment to the Nebraska Home and Community-Based Aged and Disabled (A & D) Medicaid Waiver to formally include medical transition planning and benefits analysis in preparation for employment. Nebraska was one of only two states selected to pilot the development of this new waiver service that could ultimately serve as a national model.

Project Activities

Nebraska Health and Human Services contracted with the Munroe-Meyer Institute to complete three components of the Portals Transition Project including development of a health care transition clinic, videoconference series for A & D Waiver Services Coordinators, and an education component for family medicine physicians. The purpose of each of these three components is briefly described below:

Clinic Model. A primary component of this project was to design and implement a transition clinic staffed by physicians and specialists from the Munroe-Meyer Institute (MMI). The first clinic was held 9/9/05. An interdisciplinary core team, including a developmental pediatrician, physician in internal medicine-pediatrics, adult psychiatrist, nurse, youth/family advocate, and navigator completes the assessment of the youth during the first visit. A summary report and initial transition plan is provided to the youth and family as an outcome of the assessment process. During the second clinic visit the youth, their family, and team review any additional assessment information completed as recommended from the first visit. The initial transition plan is finalized to support the youth and their family in their transition to adult based health care.

Physician Training. The second project component was on physician education with the expectation that training could increase family practice physicians’ acceptance of youth with special health care needs into their services. The clinic activities served as a site for family practice physicians to participate in an orientation and observe the clinic. A notebook of Physicians Training Curriculum and Resources on Transition from Pediatric to Adult-Based Health Care for Youth with Special Health Care Needs was provided as part of the orientation, education and discussion. A total of eight physicians participated in this component of the project, beginning 7/06 through 9/07, with the two remaining UNMC Family Medicine Faculty having met with Dr. Schaefer individually.

Services Coordinator Training. The project and HHS staff identified the importance of increasing the awareness and skills of the services coordinators regarding the clinic and health care issues of the youth with special health care needs as they were targeted to serve as one of the primary referral sources for the clinic. This grant sponsored a monthly statewide videoconference educational series led by Dr. Brad Schaefer and presented for Child and Adult Aged & Disabled Medicaid Waiver Services Coordinators. Beginning 5/17/06, the series focused on disseminating information on the clinics and transition issues for children with special health care needs. A total of 15 videoconferences were held beginning 5/06 and continuing through the end of this grant year.

2. Evaluation Findings

Evaluation Methodology

The purpose of the evaluation of the Portals Medical Transition Project was to determine the success of the program in implementing the three components of the project to date and to identify recommendations for improvement of the processes. Three primary questions guided the evaluation process including:

• How successful was the project in supporting youth and their families in the health care transition process?
• How effective was the project in supporting family practitioners in assuming the care of youth with special health care needs into their practices?
• How helpful were the videoconferences in supporting services coordinators' understanding of transition issues for youth?

Data Collection Process

Four primary evaluation strategies were used to assess the effectiveness of the project. These strategies included:

• Documentation of the number of participants in each of the three components of the Portals Medical Transition Project.
• Completion of satisfaction surveys by youth, family members and services coordinators on the effectiveness of the clinic in supporting health care transition.
• Completion of satisfaction surveys by physicians on the effectiveness of the orientation, resource materials, and clinic observations on their ability to serve youth with special health care needs.
• Completion of satisfaction surveys by services coordinators on the helpfulness of the educational videoconferences in understanding issues related to transition.

Number of Program Participants

Participants in the program included:

• Nineteen (19) youth and their families who participated in the clinics since the clinics began. These youth were seen between October 2005 and September 2007. Additionally, a staffing was held for one youth with the Transition Team, the Services Coordinator, and HHS staff. (The family had to cancel attendance at the clinic at the last minute.). Resource information was mailed to another six youth and their families, who were unable to participate in clinic. Of these youth, five were in college (four on MHCP and one on A & D Waiver.)
  
• The youth seen in clinic represented a wide range of medical diagnoses, including autism, seizure disorder, cerebral palsy, mental illness, cognitive disabilities, traumatic brain injury, scoliosis, vision problems, paraplegia due to accident, brain tumor, and spina bifida. They ranged in age from 15 to 21 years. The families were geographically distributed across the state, with nine living in the metropolitan area and the remainder living throughout the northeast, southeast central and western parts of Nebraska. Two of the families were Spanish speaking and required an interpreter and translation of reports and Transition Resource materials.
• Although the majority of the children who are on A & D Waiver do not have significant cognitive impairments, the majority (80%) of the children that were referred from A & D Waiver and were seen in the clinic did have cognitive impairments of which most were severe. For youth on the MHCP, only 27% of the youth who came to clinic had severe cognitive impairments. More of these youth had goals of competitive employment and/or post secondary education.
• 15 videoconferences were broadcast for services coordinators throughout the state.
• Eight physicians shadowed the clinic team and participated in training to date.

Dr. Bradley Schaefer met individually with the 10 faculty of the University of Nebraska Medical Center, Family Practice and Internal Medicine. These physicians agreed to observe one of the Transition Clinics. Eight have observed clinic and participated in the training orientation to enhance their understanding of the health care needs of youth with special health care needs and to better prepare them to serve this population as they become adults. The remaining two physicians were unable to participate, due to scheduling conflicts.

“There was enough time to get all of my questions answered. The group was caring, was able to get to the point. Overall, it was wonderful.” ........a parent

Result: Effectiveness of Clinic on Youth’s Transition

Clinic Model

As part of the grant’s continuous improvement process, consumers were asked to provide feedback regarding the clinic. Twenty-three (23) consumers (family members and the youth) completed a satisfaction survey, either through a telephone interview or completion of paper/pencil survey. It was prioritized to obtain youth feedback whenever possible.

“I liked the separate evaluations and I shared one of the resources with my teachers.” .......a youth

Overall, the consumers rated the clinic positively (3.43) (based on a 4-point Likert scale with 1=strongly disagree and 4=strongly agree). They agreed the clinic addressed their concerns (3.83). The consumers reported their ideas were valued (3.56) and that they were part of the decision making process (3.32), suggesting implementation of family-centered principles.

One parent recommended that the team needs to interpret the medical information in a more understandable way. Another recommended the report be sent to their physician sooner, so recommendations could be implemented quicker. They noted that the handouts and materials were a valuable resource.

Results Based the Youth’s and Family’s Response

	Strongly Disagree	Disagree	Agree	Strongly Agree	Not Rated
1. My concerns were addressed by the clinic team.	1	2	3 43% (10)	4 57% (13)
2. The information provided was clear and understandable.	1	2 9% (2)	3 48% (11)	4 43% (10)
3. My ideas were valued by the team members.	1	2	3 48% (11)	4 52% (12)
4. I liked the way the assessments were structured.	1	2	3 65% (15)	4 35% (8)
5. The resource materials provided were helpful.	1	2	3 43% (10)	4 57% (13)
6. I felt part of the decision-making process.	1	2 9% (2)	3 56% (13)	4 35% (8)
7. The clinic team provided me with information about community resources that could help meet my needs.	1	2 9% (2)	3 52% (12)	4 39% (9)
8. The clinic helped me and/or my family get other needed services.	1	2 22% (5)	3 39% (9)	4 39% (9)
9. Overall I found this clinic to be very helpful.	1	2	3 62% (14)	4 40% (9)
10. The information from this clinic will help me as I (my youth) transition to adult services.	1	2	3 65% (15)	4 35% (8)

The services coordinators (8) who were involved in the clinic process rated the clinic positively (3.63). They reported that they were impressed with the holistic interdisciplinary approach, the thoroughness of the report and the later follow-up. They noted that handouts and materials were a valuable resource.

Results Based on Services Coordinators’ Responses

	Strongly Disagree	Disagree	Agree	Strongly Agree	Not Rated
1. The clinic team addressed the family’s concerns.	1	2	3 17% (1)	4 83% (6)
2. The information provided was clear and understandable.	1	2	3 17% (1)	4 83% (6)
3. My ideas were valued by the team members.	1	2	3 57% (4)	4 43% (3)
4. I liked the way the assessments were structured.	1	2	3 83% (6)	4 17% (1)
5. The resource materials provided were helpful.	1	2	3 25% (2)	4 75% (6)
6. I felt part of the decision-making process.	1	2	3 57% (4)	4 43% (3)
7. The clinic team provided the family with information about community resources that could help meet their needs.	1	2	3 50% (4)	4 50% (4)
8. The clinic helped the family get other needed services.	1	2	3 63% (5)	4 37% (3)
9. Overall I found this clinic to be very helpful for the family.	1	2	3 37% (3)	4 63% (5)
10. The information from this clinic will help the youth transition to adult services.	1	2	3 43% (3)	4 57% (4)

“I liked the Youth Transition Plan. it will be very helpful to me as a provider when I take over the youth’s care.” ........a physician

Initial feedback from seven family practice physicians who participated in the clinic as part of a training effort found the experience to be very positive (3.48) [based on a 4-point Likert scale with 1=strongly disagree and 4=strongly agree]. They had limited experience in their current practice with young adults with disabilities. They felt that as a result of this experience that they were more likely to increase the number of young adults with disabilities that they would follow in their practice (3.29). It was noted the comprehensive list of resources they were given would be very valuable in their practice

Results for the Physicians

	Strongly Disagree	Disagree	Agree	Strongly Agree	Not Rated
1. I found the following experiences to be very helpful in learning about addressing the needs of young adults with childhood on-set disabilities or health problems:
• Observing the clinic.	1	2	3 29% (2)	4 71% (5)
• Talking with the clinic staff.	1	2 29% (2)	3 14% (1)	4 57% (4)
• Receiving the notebook of curriculum and resource materials.	1	2	3 57% (4)	4 43% (3)
• Discussion about curriculum and resources.	1	2	3	4
2. I felt prepared to care for a young adult with childhood on-set disabilities prior to participating in this transition clinic.	1	2	3	4
3. I feel prepared to care for a young adult with childhood on-set disabilities after my participation in this transition clinic.	1	2	3	4
4. I am willing to increase the number of young adults with disabilities that I follow in my practice or to begin serving this population.	1	2	3	4
5. I am already serving this population of young adults with disabilities in my practice.	1 25% (1)	2 50% (2)	3 25% (1)	4
6. I plan to use some of the materials and resources in the notebook as part of my training of residents or medical students.	1 20% (1)	2	3 40% (2)	4 40% (2)

Focus Group Findings

A focus group was conducted with the majority of the clinic team members in February of 2007. A summary of their input is provided in the following:

The clinic procedures were reviewed and modified to run more effectively. One of the primary purposes of the pilot was to test out a proposed model for an interdisciplinary transition clinic and modify procedures to increase its effectiveness. The team reflected that over the previous year and a half the team has refined the clinic process to increase its effectiveness of addressing the transition needs of the youth. For example, a summary plan was developed to augment the written report for the family and the nurse specialist now meets with the family to summarize the recommendations of the team on the day of the visit. Overall, they felt they have developed into a cohesive team that worked well together and the clinic format provided an opportunity to learn from each other. Although the clinic initially was conceived to primarily address the health issues related to transition, the team has addressed a wide spectrum of issues. The ability to use a holistic approach has helped to address the needs of the family. All team members felt the clinic via tele-health was very successful and recommend continuing to make this approach available for families who live a great distance from the Omaha area.

A parent suggested that families be given a list of the professionals they will see at clinic. This suggestion was implemented. Another parent suggested that we not use as much technical medical language in our report. We re-wrote the report of that youth to make it more family friendly and we have kept this in mind in the reports completed since then.

One of the ongoing issues, especially during the first year, was the limited referrals to the clinic. During that time period, most referrals were from the Medically Handicapped Children’s Program. Referrals from the Child A & D Waiver increased during the second year. No referrals have been received from the Adult A & D Waiver, although they provide the Waiver Services for youth beginning at age 18. More marketing is needed for the clinic to meet its capacity.

Clinic staff have found some barriers in accessing needed resources for families. For example, extensive work was done with one youth who is diabetic who needed funding for necessary supplies after she turned age 21. Accessing adult specialists, e.g., orthopedist, who have the expertise to serve persons with special health care needs, continues to be a challenge.

The clinic benefited the youth and families. The team identified a number of ways the youth and families benefited from participation in the clinic. The team facilitated a dialog for the family and youth to express their perspectives about transition, the youth’s goals for the future, and begin to discuss what steps needed to be taken. The medical evaluations provided useful information about the youth’s current medical condition, identifying issues that needed to be addressed (e.g., inappropriate medications, misdiagnoses, behavioral issues). Medications were reviewed and recommendations were made as needed. Nutrition and exercise were an issue for many youth and for several these areas were being addressed for the first time. In order to address the broad spectrum of issues presented, the team identified appropriate community resources and supported the family in making these referrals. For example, clinic staff helped youth and their family’s access community resources such as respite, free dental care and connecting the youth with opportunities for social interactions.

The project staff have continued to increase the number of resource materials that are made available for youth and their families, as well as information about services that may be of interest to them in their area. As needed, project staff research services and added resources based on the goals and needs of the youth and their family.

3. Conclusions

Lessons Learned

The team felt that a number of lessons were learned during the last two years of implementation. They are listed in the following:

• Although the primary focus of the clinic was medical, it has been important to have a broader scope and to holistically address all of the youth’s needs.
  
• The navigator role is helpful in providing follow-up with families regarding the youth’s plan that was generated based on the clinic recommendations.
  
• It was important to add a debriefing with the youth and family at the end of the clinic to review the recommendations after the team met. This provided the families with the recommendations so they could immediately begin to address the recommendations.
  
• Ongoing contact with Services Coordinators to increase their awareness of the transition clinic was determined necessary as a strategy to increase the number of referrals to clinic. Initially referrals were limited. Following the development of informational materials, i.e., a fact sheet and brochure, referrals increased. If the clinic is replicated, it would be recommended that informational materials be developed immediately to facilitate referrals to the clinic.
  
• Partnering with Services Coordinators is essential as they help youth and families solve difficult problems they face.
  
• The Young Adult Advisory Council was an important advisory group to the project. For example, Young Adult Advisory Council provided input that they felt the clinic should be called something different in order for youth to be more receptive to coming to the clinic. The term “Transition Clinic” was changed to “Transition Consultation”. Convening the group on the onset of the project would have been beneficial.
• The involvement of UNMC Faculty in this project was extremely positive and the ways in which they were involved seemed to be very effective based on their feedback, both verbally and on the Satisfaction Surveys. Various faculty members mentioned to us different ways they plan to utilize the Physicians Notebook materials in their roles of training medical students and interns, e.g., one physician mentioned he planned to write a case scenario that included a person with a disability to be used in training; another mentioned that she is going to be in charge of the curriculum for medical students the next year and she will include materials from the notebook in the curriculum.

4. Recommendations

Marketing to Increase Referrals

1. Provide ongoing information about the Transition Consultation service to Services Coordinators to increase referrals. Provide them with more information on the benefits of this service and the importance of early planning.

2. Periodically, conduct a survey of A & D Waiver Services Coordinators serving youth of the target age range to find out if they have discussed this service with the youth and families they are serving and what the responses have been. When this was done by HHS in February 2007, the number of referrals seemed to really increase.

3. Consider broadening the future planned scope of the clinic to include young adults on Medically Handicapped Children’s Program.

Continue Physician Training

4. Consider continuation and expansion of the physician’s education component to build the capacity of physicians to serve youth with special health care needs in the future.

5. The Physician Notebook is being converted to DVD and a dissemination plan is being developed.

Evaluate Effectiveness of Pilot Second Visit

6. Identify funding to continue transition consultation service to provide an opportunity to further implement the second phase of the consultations and evaluate its effectiveness.

Dissemination of Resource Materials for Youth and Families

7. Consider placing the youth and family materials on transition on a website and/or DVD per recommendation of the National consultant.

Appendix A

Consumer Feedback, Services Coordinator Feedback, Physician Feedback

Consumer Feedback
Most Helpful about the Clinic	Areas Targeted for Improvement
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.

 

Services Coordinator Feedback
Most Helpful about the Clinic	Areas Targeted for Improvement
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.

 

Physician Feedback
Most Helpful –Resource Book	Most Helpful-Clinic
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.
Recommended Additional Educational Activities
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.