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New Hampshire The Latest in Disability Research,RAP Advocacy, Policy, and Practice Sheet Spring 2019 Issue STANDING UP, SPEAKING OUT LEAVING YOUR COMFORT ZONE By Darlene Gildersleeve Welcome n 2012, my son was diagnosed with a disability. I was in shock and felt scared and to the Spring RAP Sheet I alone. Looking for help, I found the Family Voices Facebook page. Immediately, I was where we celebrate the power connected to a community of parents who understood what I was going through. of advocacy. This year marks Through Family Voices I met another mom, who told me about the Institute on the NH RAP Sheet’s 15th Disability’s Leadership Series and encouraged me to apply. I was going through a anniversary. From our very painful divorce and between taking my son to counseling, specialists, and attending first issue, advocates have been stressful IEP meetings, there was no time to do anything for myself. the stars of the show. Whether fighting to end sub-minimum Fast forward to 2017. My 11 year old daughter wages for workers with had been in the school nurse’s office over disabilities, attending every 20 times in a week. Something was terribly planning meeting to ensure a wrong. Twice I requested a Special Educa- Erskine Bobbie – Credit Photo fully accessible Main Street, tion Evaluation and was denied. Then came or persuading legislators one of the worst moments of my life. The to fund the waiting list - school called to tell me my daughter was advocates have made our state suicidal. I rushed to the school and arrived to a better place for all of us. see my scared, crying daughter being put in This is my last issue as editor. the back of a police car. For three days, she Words cannot express how was held like a prisoner in the loud, bright, much this work has meant to and scary hospital emergency department. me. Thank you to all those I cried more than I ever have in my life. On who have shared their stories my knees I prayed she would get treatment Darlene Gildersleeve and her daughters arrive at and all the readers who and would live. the NH State House for the Budget Hearing. have enjoyed them. With no pediatric mental health beds in New Hampshire, my daughter has been It’s been a great ride. hospitalized six times out of state. When another request for a Special Education SUSAN COVERT, EDITOR Evaluation was met with resistance, I found the strength to be my child’s advocate (Continued on next page) A COLLABORATIVE EFFORT BY THE DISABILITY RIGHTS CENTER-NH, INSTITUTE ON DISABILITY, AND NH COUNCIL ON DEVELOPMENTAL DISABILITIES F F F IN MEMORIAM F F F Jocelyn Marie Curtin, daughter of Marlyn and John Curtin, passed away peacefully on November 19, 2018 at the age of 40. For New Hampshire advocates, Jocelyn was a pivotal figure. Marlyn, who graduated from the New Hampshire Leadership Series in 1988, widely shared her daughter’s story. Through Marlyn’s connection with the Institute on Disability-UNH, hundreds of educators and school adminis- trators have been inspired by Jocelyn and her family’s example of creating a full life in the community. As Jocelyn got older, she began to tell her own story. Using a communication device, Jocelyn co-taught the courses “Facilitating Friendships” with Dr. Cheryl Jorgensen and “Teaching Exceptional Learners” with Susan Shapiro. Her presence in the classroom and her story influenced so many UNH students as they prepared for their careers. Jocelyn also was the highlight in the IOD film Voices of Friendship, which is still being used to teach the value of providing opportunities for real friendships. Thank you Jocelyn Curtin for being a shining example for inclusive education and full community lives. Within our state and beyond, we are in debt for the lessons that you have taught us. We are grateful to the Curtin family who in their time of loss have generously directed memorial funds to the New Hampshire Leadership Series. To make a donation - https://iod.unh.edu/projects/nh-leadership/donate. (Cover story continued) and succeeded in getting an IEP in place. It was time behavioral health services to include Mobile Crisis to finally apply to the Leadership Series. Response Services for children. We were interviewed I walked into my first Leadership class shaking and by a reporter following up on the hearing. Our story nervous. For the first time ever, I was leaving my made the front page of the Concord Monitor! I have toddler, pre-teen, and older teenage son overnight. As testified on other mental health bills and legislation we shared our stories, I saw others were nervous too. to establish Paid Family Medical Leave, something This was about to change. At each monthly training especially important to me as I was unable to work session, with guidance from excellent group leaders, when my daughter was hospitalized. I wrote my first we were being pushed out of our comfort zones and letter to the editor and it was published. I testified becoming more and more confident. at the State Budget hearing and advocated for full I found the courage to testify at two public sessions for funding of the 10-Year Mental Health Plan. In March New Hampshire’s 10 Year Mental Health Plan. I advo- I spoke at the State House rally urging the Governor cated for a plan that address children’s mental health; to sign the paid family and medical leave bill that something previous plans have not done. I learned was passed by the legislature. I am currently work- about the Children’s Behavioral Health Collaborative ing with the Hopkinton School District to set up a and signed up for their legislative advocacy training. Parent-School Special Education Partnership Group It was fantastic! This was followed by Leadership’s ses- for our community. sion with state legislators; each class member invited None of this would have been possible without the their legislators to attend. I had never made a call to knowledge, confidence, and empowerment that the a legislator. When I called Senator Feltes’ office, I was Leadership Series has given me. I am so grateful for trembling. The calls to my representatives were easier. this opportunity and encourage others who want to In February, my daughter Anna and I testified in make a difference to apply to the New Hampshire support of bill which would expand the state’s Leadership Series. 2 THE NH LEADERSHIP SERIES – UNLEASHING THE POWER OF ADVOCACY By Nancy Glynn, NH Leadership Series Engagement Coordinator, Institute on Disability-UNH The Institute on Disability’s New Hampshire Lead- books that illustrate the value of welcoming and ership Series is an intensive, nine college credit, including children who experience disability. eight-month program that provides leadership and Maya has testified at school board meetings and advocacy training for individuals with disabilities and submitted testimony on bills coming before the New their family members. Since 1988, the program has Hampshire Legislature. Maya firmly believes that par- provided state-of-the-art information and strategies ents and families should have a voice in the decisions to effect change on disability-related issues locally that will affect their children. She is currently working and across the state. It is recognized as a pivotal with families to form a Special Education Parent Advi- change experience for family members and adults sory Committee for the Derry School District. Maya with disabilities participating in the program. credits the New Hampshire Leadership Series with As a result of the work of its 1,000 alumni, New supporting her growth and leadership as an effective Hampshire has achieved national recognition for advocate. its innovative approaches to support people with To learn more about the Leadership Series, nominate disabilities and their families in their communities. a candidate for Leadership, request an application Alumni of the program hold leadership positions for the next session, or make a donation to support in state and national organizations, have founded the Series, go to https://iod.unh.edu/projects/ advocacy organizations, and are represented at nh-leadership. all levels of local, state, and federal government. The NH Leadership Series is a self-funded 501 (c) 3 Following Leadership training, Maggie Hassan was program of the Institute on Disability at UNH and is elected to the New Hampshire Senate. She went on only made possible through financial support from to serve two terms as Governor and now represents our donors and partners. New Hampshire in the United State Senate. Recent Leadership graduate Maya Levin’s four-year- old son Andy has deep love for horses and all things equestrian. Andy also experiences autism. Since grad- uating from Leadership in 2018, Maya has worked to expand inclusive opportunities for children and their families in her home community of Derry. Using her personal connections and reaching out through social media, she is organizing parents of children who experience disability. Maya also has worked with her local school board to offer trainings and resources to parents in the district. Trainings have family Levin of courtesy Photo included partnering with the Parent Information Center, A Basic Guide to the IEP Process, and Conflict Resolution in IEP Meetings. She participates in the “Read to Me” program at her son’s school, choosing NH Leadership graduate Maya Levin with her family. 3 AS LONG AS IT TAKES By Regan Burke Lamphier, Kent Street Coalition New Hampshire has a mental health care problem, April 2017, legislators arriving at the State House were and our state does not seem to be able to fix it.

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