[Highlights] [Conference Proceedings] [Presenters] [Associate Videos]
The CP Group, an organization of adults with cerebral palsy, held its third annual conference at the Doubletree Hotel in Crystal City, VA, on Oct. 19-22, 2006.
The conference attracted 58 adults with cerebral palsy, as compared to 46 in 2005 and 25 in 2004. The 58 attendees came from 16 different states. In addition to the increase in attendance, the conference was also successful in that three organizations providing services for adults have indicated a desire to explore their participation in next year’s event. And probably one of the most telling indicators of success is that several attendees want next year’s conference expanded from three and 1/2 days to four days and 1/2 days.
The Group was successful this year in establishing contact with several state Developmental Disability Councils. One council (Nebraska) sent a member and 3 others will work on sending representatives to next year’s conference which hopefully means that they will make a budget allocation. The CP work will work to establish and strengthen ties with these and other Councils during the coming year.
a manufacturer of exercise equipment had a booth at this year’s conference. The firm exhibits at 13 disability-related trade shows throughout the country and they will distribute information about The Group and the conference at these shows.
Janet, Jenner and Suggs, LLC, a Baltimore-based law firm, provided major financial support for the conference. Without this support, the conference may not have been possible, and certainly would not have been as successful. The grant enabled The CP Group to reach out to individuals and organizations who became involved not only with this year’s conference but have pledged their energies and participation for the upcoming activities of The Group. Thus the impact of the grant will extend far beyond this year’s conference. Janet, Jenner and Suggs provided support to assist The CP Group in its efforts to bring the concerns of adults with CP to the attention of the CP community and to medical professionals as well as the public at large.
Additional funding came from Cerebral Palsy Magazine, a publication that has been a supporter through grants and advertising space since the inception of the conferences. Other significant support came from a family member of an attendee of the conference.
Speakers at the conference (see listing below) included medical professionals affiliated with institutions that are at the forefront in providing medical and support services and conducting research for adults with cerebral palsy. Other speakers included adults with cerebral palsy with national reputations in areas such as women’s issues and sexuality. A goal of the CP Group is to increase the number of speakers with CP at future conferences.
The general consensus of The CP Group members was that the third conference marks a turning point for the organization. The logistics of managing the first two conferences required a massive amount of energy by members who also absorbed the financial deficits associated with the conferences. The effort of mounting a conference in coming years should ease because of the experience gained in managing the first two conferences, although financial costs will continue to be a burden.
The increase in attendance and the reduction in time required to put together the conference provides time for members to pursue other activities related to The Group. Work on a newsletter is now underway, and the initial issue will be emailed by the middle of December. The newsletter will be distributed not only to the membership, but also to other disability organizations and to health professionals working in areas of interesting to adults with CP.
The Group will also be more active in stimulating research. Several presenters, when asked about the lack of medical research to find solutions to the problems facing adults with CP, noted that research needs a large sample of adults in order to assure that the research results be meaningful. For the past two years, the CP Group has been building a data base of people with CP; the entries currently number 80, well below 300-500 sample size needed to support a research project. The CP Group will expand the data base during the coming year and inform the research community about the base in an effort to facilitate the research so sorely needed to assist adults with CP.
Participants at the conference frequently found that they faced common issues, including explaining to non-disabled people the nature of CP. Other problematic areas include personal, business and social—including romantic-- relationships with non-disabled persons. The discussion of issues and possible solutions proved so helpful in the Gender Issue session for women that participants decided to begin a listserv so that the discussion could continue. A leader for the listserv was selected, along with a technical support person, and the list will be operational before the end of the year.
This material below is not intended to be a detailed summary of the conference, but rather to convey a sense of the major subject areas discussed at the conference.
Of the 12 presentations at the conference, six dealt with various aspects of physical and mental health. One presentation focused on sexuality and the ways that adults can enhance their sexual lives; another session, divided into separate sections for men and women), discussed sexual matters and other gender issues. Two presentations focused on improving the structure of The Group and defining the goals that The Group hopes to achieve during the coming year.
The material below highlights the discussions at the presentations. Attendees, however, spent a considerable amount of time together between presentations in the hotel lobby and at meals. The conference was in fact structured to give attendees ample time to renew acquaintances from previous conferences and meet new people. The formal presentations began on Friday, but were preceded by massages and a reception on Thursday evening. Each of event presented informal social opportunities for attendees, as well as time for discussing the upcoming presentations.
A major objective of The Group is to create a national network of adults with CP that will address the economic, social and medical problems facing adults, as well as provide support for individuals experiencing these problems. This objective is achievable not only by finding solutions to the issues confronting adults but also by creating the personal bonds that strengthen The Group.
As was the case in the previous two conferences, attendees expressed concern with finding medical professionals familiar with CP and the treatments and technologies that can be used to alleviate medical conditions of adults. Improving the dialogue between the professional and the patient was the theme of one presentation that emphasized the importance of adults with CP becoming knowledgeable about the medical conditions. Adults would then be in a better position to help professionals treat CP. One presenter, a teaching professional who has attended all three conferences, said she acquires a great deal of information at the conferences that helps her better understand the issues confronting adults.
Improving the dialogue is particularly important for adults in their 30’s and 40’s who are experiencing loss of energy, pain and problems with coordination/balance that nondisabled adults do not normally experience until their 60’s and 70’s. Medical professionals are sometimes skeptical about complaints of “early aging” by adults not yet 50 years old.
Establishment of clinics for people with CP has helped improve the delivery of medical services. Clinics are often affiliated with hospitals so that an individual can see a number of medical professionals during a single visit to the clinic. Some clinics also work with specialists who can see patients with conditions associated with CP that are not frequently encountered.
Baclofen was discussed at several presentations. This treatment, which offered so much promise less than a decade ago, has not proven helpful for all adults with CP. Enough evidence has accumulated however, to indicate that for some adults (and children), baclofen can be very helpful in the treatment of spasticity and other conditions. One participant pointed out that if an adult with CP is seeing a doctor not familiar with either CP or baclofen, the responsibility of suggesting baclofen as a treatment option becomes the responsibility of the adult.
Several studies indicate that upwards of half of all people with cerebral palsy experience pain, and various techniques to manage pain management were discussed. Biofeedback, which is used to treat headaches, neck/shoulder pain, and chronic fatigue, was demonstrated. Another presentation showed how various forms of exercise (including walking, lifting weights and swimming) can be used to prevent or alleviate pain.
Many attendees were interested in various forms of complimentary and alternative medicine (CAM). Acupuncture and massage were mentioned most frequently as a means to combat spasticity and stress. An important factor in determining how frequently acupuncture and stress were used is the policy of insurance companies regarding payment for these therapies. Because the benefits of acupuncture have not been conclusively demonstrated, some insurance plans will not pay for this treatment. Massage is more likely to be covered by insurance plans.
One presentation discussed the role of a personal care assistant (PCA) in helping adults in the areas of relationships and sexuality. For some adults, the role of the a PCA is so important that adults were encouraged to bring these matters up during the initial hiring interview to be certain that the PCA would be comfortable with the social/sexual experiences of the adult with CP. The sexuality of adults with CP is as diverse as nondisabled adults; PCA’s need not embrace the sexual lifestyle of the adult in order to achieve a harmonious working relationship with his/her employer, but a clear understanding between the two is essential.
The importance of PCA’s is helping adults live as independently as possible was mentioned in other sessions, and several work sheets were distributed to help guide adults through the process of deciding what factors to look for when hiring a PCA.
Relationships and sexuality were also topics of discussion at the two sessions on gender issues. Attendees at these two sessions were promised confidentiality regarding the specific topics discussed.
As mentioned earlier, adults with CP in their 30’s and 40’s can experience the same functional limitations experienced by nondisabled adults who are 10-20 years older. This similarity prompted the U.S. Department of Health and Human Services to establish Aging and Disability Resource Centers in approximately 40 states. The Centers are designed to streamline access to long-term care, partly by developing “one-stop shop” programs that will Assist adults with disabilities make informed decisions about support options. The Centers are particularly appropriate for people with CP and other disabilities who are caring for aging parents. A number of attendees said they are faced with the problem of providing care for parents who had been provided care for them.
Dr. Marc DiFazio - Dr. DiFazio has numerous publications to his credit, including articles on pain management, movement disorders and brain injury. He is a frequent invited lecturer/participant at symposiums including "Pain Management" 2003 Consensus Meeting on the Use of BoNT in Children with Cerebral Palsy, Colorado Springs, CO August 15, 2003; Botulinum Toxin in the treatment of Cerebral Palsy: Consensus and Controversy, September 2003, Montreal, Ontario; Visiting expert, for the development of the University of Miami Program Neurotoxin treatments for Cerebral Palsy. October 24, 2003; and Invited Lecturer, Pain in Adult Cerebral Palsy. AACPDM, Los Angeles, CA, September 2004.
Mary Lee Esty, Ph.D. is a fellow of the Biofeedback Certification Institute of America and President of the Neurotherapy Center of Washington, DC. She is the author of numerous publications, including “The development of Mind-Body Self-Regulation Groups”, published in Biofeedback. Dr. Esty has spoken at more than 20 meetings of medical professionals, including a presentation on simulation treatment of cerebral palsy. She was a principal investigator on a project that evaluated the impact of biofeedback and social support on symptoms, quality of life, locus of control and mood. She has received an NIH grant for treatment of mild-moderate traumatic brain injury, and a private grant for treatment of fibromyalgia using EEG stimulation neurotherapy. EEG stimulation treatment in effective for many central nervous system problems.
Marjorie Garvey - M.B., B.Ch., M.R.C.P.I., M.H.S. - Marjorie Garvey, MD, is presently assistant professor in rehabilitation and neurology at the National Rehabilitation Hospital and Georgetown University Medical Center. She is director of the Center for Cerebral Palsy and Related Disorders at the National Rehabilitation Hospital. This collaborative effort seeks to integrate research and clinical care to serve people with cerebral palsy, from infancy to old age. Dr Garvey received her medical degree at Trinity College Dublin, Ireland, and trained in pediatrics in Ireland. She then returned to the United States and completed her child neurology training at Children's National Medical Center. After her Child Neurology Fellowship, she worked at the National Institutes of Health. Her present research projects examine brain reorganization in children with cerebral palsy.
Phyllis Madachy - Director of the Howard County Office on Aging (Maryland), one of Maryland's Aging and Disability Resource CentersFounder and member, Howard County Homes for Life Coalition, a community organization promoting universal design and home modification. 1999 to present. Charter member, National Coalition on Disability and Aging, Washington, DC, 1994. Project development: Aging in Place Initiative, a public/private partnership in Howard County, Maryland, 1999 to present. Created Operation Independence, a coalition of agency and community resources to increase the independence of persons with functional disabilities. Developed new field placements for students of Maryland's Towson University Occupational Therapy Department and Catonsville Community College Occupational Therapy Assistant program; partnered with local Occupational Therapy practitioners and state/national agencies providing assistive technology resources.
First Director of Adult Community Evaluation Services, a public agency collaborative designed to improve access of adults over age 18 into long-term care services, 1989. Participated in workshop in Berlin, Germany with Johns Hopkins University and German gerontologists about best practices for aging in place. 2005
Developed one of Maryland's Aging and Disability Resource Center pilots, 2003-2006. Implemented the Chronic Disease Self Management Program, an evidence based program designed to improve the health outcomes for persons with multiple chronic conditions. 2005 to date.
Linda Mahler - Ms. Mahler has been a disability rights advocate since 1979. She earned her law degree in 1986 and worked at the Maryland Disability Law Center representing adults and children with CP. She left the practice of law in 1994 and spent the next 9 years directing ILH, Inc., a non-profit organization that provides housing and support services to adults with disabilities. She is embarking on a new career in disability as a special education teacher, having recently completed a master's degree in bilingual special education.
Emily R. Perlman, MS, CTRS Emily Perlman received her MS from the University of North Carolina at Chapel Hill then began her 22-year career in mental health doing stress management and inpatient psychiatric recreational therapy. Her areas of expertise include surface EMG biofeedback for pain management, psychophysiological biofeedback for stress management and pain reduction, EEG stimulation neurotherapy.
Harilyn Rousso - is President of Disabilities Unlimited Consulting Services, an organization that provides consultation, training and research on disability equity issue to promote equal opportunity for people with disabilities. Ms. Rousso is an educator, social worker, psychotherapist, writer, painter and advocate who has worked in the disability rights field, with a particular emphasis on issues of women and girls with disabilities, for more than twenty years. Ms. Rousso is the founder of the Networking Project for Disabled Women and Girls of the YWCA/NYC, a unique mentoring program that has been replicated widely, and the executive producer of the documentary Positive Images: Portraits of Women with Disabilities, and author of numerous publications on gender and disability.
She serves as newsletter editor/consultant for The Women's Center, a disabled women's health care program sponsored by Premier HealthCare and curriculum developer/trainer for the Center for Independence of the Disabled in New York (CIDNY). Ms. Rousso is a member of the board of directors of the Center for Women Policy Studies and the National Women's Hall of Fame, a former board member of the Ms. Foundation for Women, the Sister Fund and Educational Equity Concepts, and a former commissioner with the New York City Commission on Human Rights.
Eva Sweeney - Ms. Sweeny is a publisher of a resource guide that deals with issues of sexuality and homophobia for people with disabilities. She has also created three different workshops about issues of sexuality and disability, designed for different types of audiences coming from different perspectives and levels of experiences. Her workshops have been presented at youth groups, academic conferences and queer conferences. Ms. Sweeny is founder/director of Queers on Wheels.
Laura Vogtle, Ph.D. - is an occupational therapist who has worked with children and adults with cerebral palsy for over 30 years. Her early practice was in Charlottesville, Virginia at the University of Virginia where she worked with various assistive technology applications such as seating, wheelchair prescription, and augmentative communication, as well as individual treatment of persons with cerebral palsy. She went back to graduate school and completed her doctoral work in 1996. At present, she is a faculty member at the University of Alabama at Birmingham in the Department of Occupational Therapy. Since moving to Birmingham, her concerns have been focused on issues adults with cerebral palsy encounter in their lives, specifically transportation concerns, living with pain, and community activity. She is a member of the American Academy of Cerebral Palsy and Developmental Medicine, and has been a member of the Lifespan Care Committee for 6 years.
Robert Watson - is the Executive Director of DateAble, a nonprofit dating service for people with and without disabilities. He is also President of United Cerebral Palsy of Montgomery and Prince Georges County (MD) and advises many other disability advocacy organizations. He has spoken in the United States, Canada and Australia on a variety of disability-related subjects, including disability awareness, sexual intimacy issues, personal financial planning for a person with a disability, and the critical importance of being your own personal advocate.
Several videos clips of associates were recorded at the conference this year. Go to the new Videos section to view the clips.
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Last Updated: 12/25/2007