HORIZONS A Newsletter for Families and Friends of Crotched Mountain Summer 2003 Vol. 3, No.1 A Home of Their Own Scott and Sean Leave Crotched Mountain to Share a Home in Bennington Sean Magoon and Scott Abrams didn’t plan on sharing a home. In fact, each had quite different plans. But both men sustained brain injuries more than ten years ago and became friends at Crotched Mountain’s Brain Injury Center. They have continued to live at Crotched Mountain because there hasn’t been a suitable community accommodation available to them. But now, after a lot of hard work by dedicated family members and the support of Crotched Mountain staff, Sean and Scott will move into a home of their own. A Moment In Time One split second in time changed Sean’s life when a serious automobile accident took the life of his girlfriend and left him unable to walk, with limited speech and with the use of just one hand. “Sean worked for years on power wheelchair training, because he couldn’t move in a manual chair,” explains Belinda Ryan-Beauchemin, transition program manager at Crotched Mountain. Today Sean navigates on his own through the Brain Injury Center and with assistance in the larger community. Scott came to Crotched Mountain’s Brain Injury Center after he was knocked off a roof by lightning. He was in a coma, initially, and he remained sleepy and easily distracted when he first arrived at Crotched Mountain, but the staff and the environment soon raised Scott’s level of awareness, actively involving him in his own rehabilitation. “There is an extraordinary quality of caring and attention of staff at Crotched Mountain that is dedicated to every client’s well-being,” emphasizes Scott’s mother, Hester Abrams. “They understood that athletic interests were a big part of Scott’s life before his accident,” she continues. Scott was an avid outdoorsman who loved rock climbing and scuba diving. “Crotched Mountain provided rehabilitation that included lap swimming and scuba diving,” Abrams continues. Scott now uses a wheelchair and can walk with assistance. Walking is difficult for him, but he perseveres. Next Steps Neither Scott nor Sean wanted to live in a nursing home or a group home. They could manage a level of independence in an accessible home with staff assistance. Each man’s individual disability funding would pay for staff assistance and shared living costs, but accessible housing seemed out of reach. So Sean’s grandfather donated the land and Sean’s father (Sean, Sr.) designed a one-story open-concept ranch home with three bedrooms, an accessible laundry and an accessible kitchen. Friends, neighbors and local laborers helped him build the home with extra-wide doors, bedroom exits, ramps and an accessible bath. Scott’s mother contributed new furnishings. From Setback to Completion Then, just as everything neared completion, Medicaid funding of the type each man would have received was frozen. Sean’s father felt as if the rug had been pulled from under him. Sean’s grandmother, however, refused to accept defeat, although if you asked her, Marie Magoon would say she “didn’t do anything special.” “I knew about some hearings, and I had the paperwork, so I took my documents and talked to the right people and we got it done,” she smiles. Mixed Emotions “My first impression, seeing the house that Sean Sr. built, my knees barely held me as I walked in,” said Scott’s mother, who travels from Texas to visit her son. “I wept.” “To be honest, I was a little apprehensive, but this has been my goal and the goal of the people at Crotched Mountain for a long time,” said Sean’s dad. “Having Sean at Crotched Mountain was a big relief for me, they just do an amazing job.” Scott and Sean will be able to handle the laundry and some cooking with staff assistance. They both want to do as much for themselves as they can. They plan to purchase a used van with a wheelchair lift and are applying for funds for a ceiling track that will support the Hoyer lift used to transfer from bed to wheelchair. Both men have an active rehabilitation schedule and can direct staff to help them with the activities of daily living. They will return to Crotched Mountain for aqua therapy, group therapy and entertainment such as Wednesday night coffee house events. Scott will have his own room. Sean will have a cat. They will have a home of their own! Model for the Future Crotched Mountain works with families to create solutions for living accommodations and to advocate on behalf of people with disabilities for funding that supports community integration. Always Moving Forward: The Brain Injury Center by Peg Lopata From its earliest days, Crotched Mountain was among the very few institutions nationwide that could adequately care for someone with a brain injury. Sadly, though, patients often stayed many years longer than necessary because funding was unavailable for clients to return to their communities. A brain injury usually meant one thing: the rest of your days in an institution. There were others far worse off, languishing in nursing homes, close to their homes, yes, but far from improving and returning to any semblance of their former lives. Crotched Mountain has always sought a better way to treat people with brain injuries so that they can return to the life they had before they were injured. Now, according to Bud Elkind, director of the Brain Injury Center, “With funding in place, we’re able to have a reasonable expectation when we admit someone that we’ll be able to get them back into their communities. Our goal is to not have anyone here any longer than is required for their rehabilitation.” At the Brain Injury Center, the average stay is now months, not years, as it used to be. Crotched Mountain’s Brain Injury Center is unique because it provides rehabilitative services for people with brain injuries exclusively. This 30-bed, subacute, client-centered facility is dedicated to the rehabilitation of adults who have experienced a brain injury through trauma, stroke or other injury. As most of us know, medical care — trauma care, diagnostic tools, and how we pay for it—has changed dramatically in the past decades. How has this affected the Brain Injury Center? Elkind explains, “Four or five years ago we used to see people come after four, five, maybe six months after entering acute rehabilitation. Now we see them between fourteen and thirty days after acute rehab. The needs of our clients and simply the number of them due to better trauma care, have risen very dramatically. We’ve expanded proportionately." About six years ago, the Center had ten clients on a single wing. Currently, there are twenty-eight clients in a multi-million-dollar renovated and expanded space completed three years ago. Elkind remembers when they worked with less. “We had a fifteen-bed unit. It was a typical 1960’s nursing unit—green tile walls, clean as a whistle, but very little therapy space.” Now, not only is the space larger and better designed for therapeutic care, the care program has changed and the staff has grown. There are six certified brain injury specialists on the adult program, with hopes of hiring more of these types of specialists by the end of the year. Always seeking to improve the quality of care, the Brain Injury Center has very recently modified its program again, focusing on better preparing clients to return to the community. Says Elkind, “Everyone is in active transitional therapy. It’s a more intensive community-based type of program.” Another recent change is the development of a substance-abuse model to support brain injury therapy. About forty percent of the clients here have had substance abuse difficulties before they arrived at Crotched Mountain. There are now AA meetings right on campus, and the Brain Injury Center is seeking to hire its own substance-abuse counselor. Much has changed in caring for people with brain injuries and the Center has been at the forefront of these changes. “If you go back far enough you’ll find that people with brain injuries or developmental disabilities were kept inside. They were shunned,” says Elkind. Thankfully those days are gone. In fact, Elkind hopes in the future to tie into community-based residences so not everything has to be done on the mountain. “We want to expand our vocational training and transitional coordination to get people to higher functioning levels.” One of the keys to success for clients at the Brain Injury Center is of course, highly qualified and specialized people, such as Bud Elkind, one of few examiners in the country qualified to certify brain injury rehabilitation specialists. Elkind, along with the other highly trained staff at the Brain Injury Center, is intensely dedicated to helping clients get the best care they can while here, continually bearing in mind the goal to get them off the mountain, back into the community, and living life as independently as possible. Says Elkind, “We want to be able to give our clients, on the date of admission, a planned-out course of therapy. We want them to complete that therapy and have them discharged to a much higher level of independence in the community. We want them to get on with their lives.” Expanding the Vision From the President The view from Crotched Mountain is ever changing...daily, seasonally and strategically. One day’s idea can become next year’s goal. Past years’ accomplishments become the foundation for the future. Dreams can be the basis for new directions. All of it woven through an incredibly beautiful, incredibly alive environmental tapestry. Over the years, the Mountain’s programs and services have evolved to meet the needs of our students, clients and the community. We have served individuals and their families with functional, goal-oriented and outcome-based supports, moving always toward independence, least restrictive environments and highest potential achievements. Additionally, Crotched Mountain contributes over $2 million in community benefits, annually, ranging from dental services to outpatient clinic services, aquatic therapy and recreation to driver evaluation and training. Everyone who currently works here, has worked here, has received our services, supported our programs or enjoyed our events and amenities should feel proud of what we do here. It’s wonderful. And it’s going to continue to be wonderful. There is excitement here because nothing is ever static. We grow and change because the world changes. Goals change. Thinking and attitudes change. Winter thaws, the sap runs and our students are able to make maple syrup as part of an environmental science project! At the same time, the Board of Directors and staff and I are immersed in the strategic planning process. We’re looking at the land and facilities, our housing programs, education programs, transitional services and health and rehabilitation services. We’re thinking out loud about a mission that embraces personal choice and champions the development and building of communities of mutual support. These are bold new ideas, based on past experience and successes. We are shaping and reshaping our values to emphasize the client experience, person-centered planning, and expanded partnerships with individuals, families and their communities. On a more tangible scale we have located a family to run Sunnyfield Farm, just the way we and the donors envisioned it, with horses, cattle, sheep, pigs, chickens and guinea fowl. The structures will be restored, the soil revitalized and a productive, working family farm will provide learning, living and caring opportunities for our students. In February, 25 of our students participated in three days of Winter Special Olympics at Waterville Valley. Accompanied by 33 staff, these students competed in snowshoeing, cross countryskiing, snowboarding, alpine skiing and adaptive skiing. This experience also provided the opportunity for positive social interaction between our students, other participants and staff. Shortly after their return, ten of our staff plunged into the icy Atlantic to raise money for Special Olympics. We have opened a lovely new residence, Kaycie Lane, that better accommodates our clients and allows us to close more costly sites. A new contract with the Hanover/Lebanon Area Agency will allow a graduating student to continue to live in the Greenfield area, near caregivers who know and can support his special needs. While we are ending the “Saturday Night Out” respite program, we are partnering with the Harry Gregg Foundation to expand grantmaking in the Monadnock area for recreational and respite funds. All of these accomplishments are possible because of the caring, the talents and ideas and the support of our staff, our clients and their families, our volunteers and our loyal donors. Thank you, all. Donald L. Shumway President and CEO L.G. Balfour Foundation Awards $300,000 to Fund Transition Services from School to Community Living Crotched Mountain’s determination to provide a “Lifelong Alliance to People With Disabilities” has been strengthened by a $300,000 award from the L.G. Balfour Foundation of Boston to be administered over three years. Through this project, we will work in partnership with families of students who attend Crotched Mountain School, providing support at the time of transition to accomplish goals of self-determination. At the very point in time when families are most vulnerable, supports from the educational system end. Families must cope with new funding systems and new service agencies that know little about them or their children. Skills and behaviors acquired at Crotched Mountain through many years of hard work can be lost. This model project will work with families when they need assistance and where assistance is currently not available. Crotched Mountain will seek additional private funding to continue the project after the initial three-year funding period. Jean Polovchik Honored Crotched Mountain School science teacher Jean Polovchik received a 2003 Excellence in Teaching Award from maaps, the Massachusetts Association of 766 Approved Private Schools, in May. The award included a $100 grant for continuing her professional education and commended Polovchik for her dedication, innovation and her rapport with students. Some highlights of her 20 years at Crotched Mountain include units on maple sugaring, tracking the wild turkeys and creating a wheelchair accessible nature trail. Staff Profile Polly Lehto “I was extremely shy before I came to work in the Brain Injury Center,” Polly laughs. “But I’m not shy anymore.” A licensed nursing assistant, working as a life skills trainer, Polly teaches adults with acquired brain injuries to dress themselves, take care of their personal needs, to eat and to communicate. “It’s not easy for someone who was once independent to have to learn these skills all over again,” says Polly. “When I’m helping someone to shower, I talk to them about my pets or their family, anything to divert their attention from the fact that they’d rather be doing this for themselves. But at the same time, I’m helping them to be as independent as possible.” “There’s a quality of life here that I haven’t seen anywhere else,” Polly says after nearly five years in Crotched Mountain’s Brain Injury Center. “When a client is depressed or angry, there is time to listen. And then, sometimes by just being there or by telling a story, you can turn their attitude around.” “We try to understand how frustrating it is for people who are notable to do what they used to do and to cope with the realization that they may never be able to do these things again." Clients will say to Polly, “Your help means a lot to me,” One gentleman even kissed her hand. “We give and get hugs,” Polly smiles. “We are always encouraging our clients to exercise as much as possible, to walk as often as possible.” At the end of her day, Polly reflects, “It’s nice to feel that I’ve been able to make someone’s day happier, that I’ve made someone laugh or helped them do something new. That’s important to me." Maple Syrup on the Mountain a Sweet Success Tim Camp of Weare and environmental project manager Jim Orr led Crotched Mountain students in the placing of 420 taps on the Mountain and at Sunnyfield Farm. Parent-volunteer Camp spent about 400 hours on this project Many trees were accessible only by snowshoe in the frigid temperatures and deep snows of early March. Cale Bullis chose maple sugaring as his senior project. In the fall, with the help of other science students, he identified and marked about 55 sugar maples in close proximity to the school. Cale and the maintenance department cleaned out the sugar house, an enormous task, with assistance from Armand Comtois’ class and help from Ashok Malik in repairing an aging pump. Ashley Pecor was one of many students who hung buckets while Tim Camp laid lines of flexible tubing from the taps. Finally in late March, the weather warmed to the 40o days and sub freezing nights that make the sap run. Meanwhile, slabwood had been stacked and the evaporator was ready to be fired. Moira Stern helped transfer sap from buckets to the collecting tanks. About 70 Crotched Mountain students participated in the maple sugaring project initiated by science teacher Jean Polovchik. All were thrilled when, on March 20th, Crotched Mountain won the fancy grade title in the Monadnock Ledger maple syrup contest! Audiology Announces New Diagnostic Equipment Grants from The Gilbert Verney Foundation and the State of NH Dept. of Health and Human Services fund project that moves Crotched Mountain to the leading edge of audiology services. Hearing loss is the most common birth defect and congenital hearing loss interferes with the most basic human need: to communicate with others. Crotched Mountain has acquired Auditory Brainstem Response (ABR) equipment and new loaner hearing aids that will enhance testing services for people of all ages with hearing loss. The new equipment measures brainwaves produced when the ear hears sound. These services are made possible by grants of more than $27,000 awarded by the Gilbert Verney Foundation of Bennington and the State of NH Department of Health and Human Services. Especially significant is that the new ABR diagnostic equipment enables the testing of newborns and difficult-to-test children. Crotched Mountain has two pediatric audiologists on staff who often work as a team in these cases. Crotched Mountain will be involved with other ABR locations in Keene, Concord, Manchester and Portsmouth to help identify every child born with a hearing loss in New Hampshire by the age of three months and to provide them with appropriate early intervention. Additionally, a variety of loaner hearing aids is now available for people of all ages through Crotched Mountain’s outpatient audiology services. Media Center Magic With Pam Shea In 1993, the doors were opened on Crotched Mountain’s Media Center to serve the students at the school, everyone else on the mountain, and the community-at-large. Pam Shea, director, began working on the mountain as a media specialist in 1977, and was a key player in creating this most marvelous resource. It’s an extraordinary place, with a state-of-the art presentation room that features a 15-foot movie screen and surround sound. Despite Shea’s modest insistence that “it’s just an ordinary library,” it is far from ordinary. And Shea admits, “Yes, we have the three bears that everybody else reads. But we also have the three bears in sign language, in video, on tapes and on tapes that the students at the school have made." It’s true. Shea is surrounded by the ordinary materials of most libraries—books, magazines, and videos. And she has created a place where there’s nothing unusual in having a scanner with a voice synthesizer, computers that work with children who can’t press keys or click a mouse, and video magnifiers. And that’s the beauty of this place. It’s extraordinary to those of us not disabled. It’s just a library to those who are. First of all, there’s the technology that makes using this library natural and easy—for everyone. Then, there’s the wide spaces between shelves, tables and computer stations. The height of most bookshelves makes everything reachable. Wheelchairs can easily fit under the desks and tables. The theater has no fixed seats. As Shea says, “Accessibility is really the theme of this library.” The design elements of the library and the theater are necessary for the children here, as many have trouble organizing and putting themselves in any environment. And then there is the collection. Ordinary? Yes and no. This library might be one of the few that has a video on how wheelchairs work. But Shea knows all children want to learn similar things about the world, read what’s popular and watch Disney movies. The children use Freddy Fish and Pajama Sam software. But what about books about being disabled? Isn’t it politically correct to fill this type of library with books where at least one character has a handicap? Doesn’t that make these kids feel better about themselves? Not so, says Shea, who really knows these children. “I wouldn’t cater a library to materials about disabled kids.” That said, this library does not leave out books about children with handicaps, such as the wonderful book Sam and His Cart where the main character is in a wheelchair and has cerebral palsy. But adds Shea, “Children in wheelchairs are not interested in dwelling on the fact that they are in wheelchairs. They want to read the Harry Potter books too.” Books, TV shows, and movies about disabilities are often written by disabled people themselves, to make the rest of us feel comfortable with and sensitive to the differently-abled. But Shea’s focus is more diverse than just including materials about disabled people. She has built a multicultural collection—and one that has gained some renown. Teachers from the community often come here for books that will help their students learn to respect diversity, of all kinds. Naturally, any place that welcomes the less abled, would be most inviting to everyone. It’s really two libraries in one—a professional library and a children’s library. Students from the school can go to the theater for a virtual night out camping under the stars, or relaxation, and researchers have access to on-line databases. Shea estimates that about 25% of the users are from “off the mountain.” And anyone can add a piece to the on-going community puzzle, or participate in the new program called DEAR (Drop Everything And Read) to read books to the children. Last year alone brought some 9,000 people passing through this library’s doors—which of course, are automatic. It is clear that Shea’s heart is, first and foremost, with the children. She truly knows how to get these children what they need and want. And their future needs are always being considered, as well. “Our knowledge about our children is changing continually. We’ll expand what we offer as the knowledge about learning disabilities expands,” promises Shea. It’s not surprising then to find that this library is more than merely a collection of materials, or just plain ordinary. Shea puts it best of all. “We’re in a place where we can see miracles happen." Philanthropy Topics Edna Hill Anderson Leaves $116,000 to Crotched Mountain Born just after the turn of the last century in 1905, Edna Hill Anderson lived all of her life in Manchester, New Hampshire. Edna was an only child and was raised by her mother, Louise Hill, a single parent. As a young bride, Edna lost her husband to illness after just three years of marriage. She never remarried. After her husband died, Edna lived with her mother. When Edna was 30, she and her mother lost their home in the flood of 1936. They relocated to Upper Lake Avenue where Edna lived for the next 65 years until her death in 2000. Edna lived simply and because she devoted her life to her mother, she never had the opportunity to travel. Until her retirement she was a shoe worker at J.F.McElwain. She enjoyed her flower garden, outings with her friends and her little dog. She collected pink Depression Glass and kept a rocker on her porch. As the beneficiary of inheritances from her bachelor uncles, and her careful lifestyle, Edna Anderson left a sizeable estate. Her generosity included Crotched Mountain and other organizations that provide services for children and families. How You Can Help Crotched Mountain Every gift made to Crotched Mountain helps children and adults with multiple disabilities and their families toward lives of personal choice and development and to build communities of mutual support. You can help by: Naming Crotched Mountain in your will. Contributing through payroll giving or your employer’s matching gift program. Remembering someone special with a memorial or tribute gift for a wedding, birthday, graduation or other important occasion. Making a gift of cash, personal property or appreciated stock. Contributing to or creating an endowment fund. Establishing a gift annuity or charitable remainder trust, providing income for life. For more information about estate planning and other opportunities for charitable donations, please contact Patricia Whitney, Director of Development, Crotched Mountain Foundation, 1 Verney Drive, Greenfield, NH 03047 or by telephone at 603-547-3311, ext 471. Welcome Pat Whitney, Director of Development has been part of the Crotched Mountain Advancement team since August. Pat completed a successful capital campaign in 2002 for the Visiting Nurse Alliance of VT and NH. Prior to her tenure at the Visiting Nurse Alliance, she was communications director for Easter Seals New Hampshire. Molly and Dave Hajjar in Grenada The West Indian Islands with daily sunshine and year-round 85o temperatures are a long way from Crotched Mountain. Dave, a speech language pathologistat CMRC from 1998 and Molly, a recreational therapist at CMRC from 1996, left the Mountain for Grenada in 2001 as Peace Corps Volunteers. As the only speech language pathologist in the Caribbean tri-island nation, Dave was assigned to the Grenada School for Special Education. The school serves about 60 students, ranging in age from 5-22, with cognitive, developmental, physical, speech and language and learning disabilities. Dave works primarily with the seven teachers, many of whom have never received any formal training in special education. Molly works with the Ministry of Social Services, consulting as a recreational therapist. Her focus is geriatrics and training the caregivers at all the nursing homes around the islands. Molly has developed the Geriatric Networking Group of matrons/supervisors from each of the ten homes to advocate for geriatric issues. As you can imagine, supplies and program materials are often scarce in Grenada. Dave cites the need for new or gently-used children’s books. To send books to Dave in Grenada, visit www.childrensliterature.org and access the Reader-to-Reader program. To contact Dave and Molly directly, e-mail them at davemolly@hotmail.com. HORIZONS is published by the Office of Advancement, Crotched Mountain Foundation. For more information, please contact: Pat Whitney Director of Development Crotched Mountain Foundation One Verney Drive Greenfield, NH 03047 603-547-3311, ext. 471 patricia.whitney@crotchedmountain.org Visit www.crotchedmountain.org