Diabetes Wraparound Program of UPMC Children’s Hospital of Pittsburgh (DWP)

Advisory Board

Application Kit for Family Members

(Please note that there is a separate application kit for young adults and Community/System Partners)

Applications due: October 19, 2018

This packet includes an overview of the Diabetes Wraparound Program of UPMC Children’s Hospital, an application form for family members, and complete instructions

for applying to become an Advisory Board member.

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Diabetes Wraparound Program of UPMC Children’s Hospital The Diabetes Wraparound Program of UPMC Children’s Hospital of Pittsburgh (DWP) is seeking applications from family members who have or are currently raising a child or children with Type 1 Diabetes (T1D) to serve on an Advisory Board. The Advisory Board is comprised of twenty-one total members. One third of these members are young adults, ages 18-26, with T1D, one third are family members who have or are currently raising a child or children with T1D, and one third are professionals in related community or other child-serving systems. The purpose of this Advisory Board is to oversee the development, implementation and management of the new Diabetes Wraparound Program of UPMC Children’s Hospital. Diabetes Wraparound Program of UPMC Children’s Hospital of Pittsburgh - Overview The goal of this program is to develop, implement, test, and refine innovative ways to support youth with T1D and their families, by recognizing that the youth and families experience many stressors related to T1D management in every aspect of life. These stressors can involve factors in emotional, social, educational, and health/medical areas. The aim of this new program is to identify, address, and remove barriers to successful T1D management and the intended outcome is to improve management of T1D and achieve successful living with T1D, for both the youth and their families. As acknowledged, some youth with T1D, and their families, struggle with significant stress that can lead to depression, anxiety, or other behavioral and/or mental health issues that, in turn, can contribute to poor blood sugar control. Examples of the stressors experienced by youth with T1D and their families can include insurance or monetary difficulties (resulting in lapses in insulin refills or medical supplies), difficulty with communication, understanding and cooperation with caregivers (babysitters, grandparents, extended family, etc.), personnel at school, school activities/sports or recreational/sport activities, resulting in barriers to appropriate T1D management in normal teenage activities. The American Diabetes Association highlights the central role of stress in achieving blood sugar control targets, especially in youth with T1D, but there is currently no successful model that specifically addresses stressor identification and remediation. We look, therefore, to the field of mental health and see that High Fidelity Wraparound (HFW) has been successful in helping youths and families learn how to identify, meet, and coordinate their own needs; follow with best practice medical treatment; and identify and draw on their natural supports (e.g., extended family, friends, teachers, members of clubs or other groups, neighbors, clergy). We believe the same model can be successful for youth with T1D and their families. . HFW provides a structured, creative, and individualized team planning process that, compared to traditional treatment planning or even case management, is more effective and relevant to meeting the needs of the child and family. HFW plans are more holistic: they are designed to also meet the needs of caregivers and siblings and to address a range of life issues. Strong evidence of the effectiveness of HFW has been included in the Surgeon General’s reports on both Children’s Mental Health and Youth Violence and is mandated in several federal grant programs.

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Thus, the proposed Diabetes Wraparound Program of UPMC Children’s Hospital wishes to develop and pilot HFW to employ an innovative way to support youth with T1D and their families, in their own community, toward improved diabetes management, adjustment to the disease, quality of life, overall well-being, and healthier outcomes related to blood sugar control. The Advisory Board will:

• Provide input to help make the Diabetes Wraparound Program (DWP) of UPMC Children’s Hospital successful

• Provide oversight to the program’s development and implementation by recommending priorities, monitoring progress and to assuring that progress and results are communicated to youth, families, and professional groups as well as to the wider community.

• Reflect the diversity of those with T1D (we are seeking members of different ages, gender, ethnicity, socioeconomic background and geographic location).

If selected as a member of the Diabetes Wraparound Program of UPMC Children’s Hospital Advisory Board, you will be asked to attend the Advisory Board meetings to be held monthly at Children’s Hospital of UPMC in Lawrenceville. Childcare will be provided if needed, and travel expenses (mileage and parking) will be reimbursed. All family member Advisory Board members will be given a stipend for approved meetings. This stipend is intended as a token of appreciation for your time and expertise. The amount of the stipend has been determined by the program leadership and is based on the length of the meeting and available funds. Advisory Board Questions and Answers: How do I become a board member? The first step to becoming an Advisory Board member of the Diabetes Wraparound Program of UPMC Children’s Hospital is to fill out this application and send it to: Amy G. Nevin, MD Children’s Hospital of UPMC Faculty Pavilion, 7th floor, Room 7113 4401 Penn Avenue Pittsburgh PA 15224 agnevinmd@gmail.com Applications will be reviewed by the leadership committee, who will keep all information contained in the application confidential. Members will be selected based on pre-established criteria. Once the decisions have been made, you will be contacted to let you know if you have been selected. Please note that there are separate application kits for young adults and community/professional applicants who are interested in being on the Advisory Board.

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Who can become an advisory board member?

Anyone who has or is currently raising a child or children with T1D, can apply to be on the Advisory Board. The focus of this Program is teenagers ages 12-15 so past or current experience with a child in that age group is important. We will also be seeking family representatives that represent the diversity of those with T1D.

How many people will be selected to be on the Advisory Board? There are seven slots for family members on the Advisory Board. Since this is a newly forming advisory board, we will be filling all slots at this time. As vacancies occur, applications for new members will be solicited, reviewed and selected. There will be twenty-one total members on the Advisory Board. How does the selection process work? The DWP pilot project leadership will review all applications and make the initial selections based on the selection criteria. How often are board meetings held? Advisory Board meetings will be held every month on the first Tuesday of the month from 6:00-8:00pm (a light meal will be provided). Advisory Board members are expected to attend at least 80% of the meetings. Occasionally, an additional meeting, training or committee meeting may occur, but you will be notified in advance. Where will the board meetings be held? The Advisory Board meetings will be held at or near UPMC Children’s Hospital in Lawrenceville depending on available space and parking. How much will I be paid? You will receive a stipend for each approved meeting that you attend. This stipend will be a small way of showing how much we value your input and participation. The stipend amount is dependent on the length of the meeting. For a two-hour meeting, you will receive $30 (depending on available funding), mileage and parking reimbursement, and child care costs if applicable. When are the applications due? Applications are due no later than 5:00pm on Friday, October 19, 2018.

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When will I know if I have been selected as a board member?

Someone from the Diabetes Wraparound Program of UPMC Children’s Hospital will contact you to let you know if you have or have not been selected.

If I am selected to be an Advisory Board member, what will I have to do? You will have to:

● Work with other youth, family members and professionals to oversee and develop the Diabetes Wraparound Program of UPMC Children’s Hospital, for youth with T1D, and their families.

● Represent the views of other family members who are raising a child or children with T1D to help shape the vision and goals of the Program.

● Help set the Program priorities. ● Monitor ongoing implementation of the work plan. ● Monitor ongoing evaluation, quality assurance and continuous quality improvement ● Report on the success of the Program and advise on communication strategies. ● Attend and actively participate in the monthly meetings.

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Diabetes Wraparound Program of UPMC Children’s Hospital Advisory Board Application for Family Members

The following questions ask for some personal information. It is important that we select Advisory Board members who represent the diversity of Allegheny County as well as those who have a significant and extensive understanding of T1D. This information is confidential and will not be shared with anyone except the Program leadership without your written consent. If you need extra space to answer any of the questions, feel free to use a separate piece of paper. Thank you for your interest. Your name: Mailing address: Daytime and evening telephone numbers: Best time to call you: E-mail address: 1. How old is the child (children) with T1D that you are raising? What was the date of

T1D diagnosis? 2. Tell us about some of your experiences in dealing with the medical health system

(including hospital stays, diabetes outpatient/clinic visits, diabetes doctors, primary care physicians, nurses, dieticians, social workers etc.), and school nurses/school health office. This information will be kept confidential.

3. Tell us about some of your experiences in dealing with other systems such as

education/school system, school nurses, teachers, behavioral/mental health, child welfare, medical assistance, juvenile justice, drug and alcohol, etc.) Again, all information will be kept confidential.

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4. Have you ever been involved with any T1D family support and/or family organizations? Please describe:

5. Are you now, or have you ever been involved in any T1D community organizations

(such as The American Diabetes Association [ADA] or Juvenile Diabetes Research Foundation [JDRF] or on any related committees?

6. Are you now or have you ever been involved with any online T1D social media

communities such as Facebook, Twitter, or YouTube? If yes, please describe: 7. Are you now, or have you ever been a member of any kind of advisory board or board

of directors? If yes, please describe: 8. Why do you want to be a member of the Diabetes Wraparound Program of UPMC

Children’s Hospital Advisory Board? 9. Briefly describe any experiences or other skills that you have that would benefit this

Advisory Board:

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10. Please complete the following information about yourself:

a. County and community where you live: b. Race:

_____Black/African American _____White/Caucasian _____Alaska Native/American Indian _____Asian _____Multiracial _____Other, Please specify__________

c. Are you Hispanic/Latino?

_____Yes _____No

d. Gender:

____ Female _____Male _____Transgender _____Other

e. Do you identify as LGBTQIA? _____yes ____No _____Refused _____Unsure

f. What is your current level of education?

_____Graduated High School/GED _____Tech School _____Associate's _____Bachelor's _____Master's _____Doctorate _____Other

g. Are you currently employed outside of the home? Yes____ No____ h. If yes, where do you work and what do you do? i. What range does your current annual household income currently fall:

_____$0 - $24,999 _____$25,000-$49,999 _____$50,000-$74,999 _____$75,000 - $99,999 _____Greater than $100,000 _____Refused

j. Is there anything that will prevent you from attending meetings or participating in the meetings? Please describe:

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k. How did you hear about this opportunity?

l. Please provide on professional letter of reference. This letter should not be from a family member or from anyone related to you. The letter should be short and contain the following information:

➢ Name of the person and their contact information ➢ How they know you and how long they have known you ➢ Why they think you would be a good addition to our Advisory Board

* Your reference may send their letter of reference directly to Amy Nevin, MD

(address listed above) or you can send them with your application. Thank you again for your interest in the Diabetes Wraparound Program of UPMC Children’s Hospital of Pittsburgh!