On March 6-7, 1997, The Roundtable on Aging and Cerebral Palsy, a group of 18 people with cerebral palsy met in Washington, DC to discuss areas of concern. Building on this discussion, the participants drafted an agenda specifying areas in which research 1)would clarify the impact of aging on adults with cerebral palsy, and 2)suggest changes in technology, therapies and other treatments that would alleviate some of the difficulties associated with aging and disability.
In addition to identifying areas of research, the agenda also calls for the development of guidelines and changes in the diagnostic and treatment methods used treat and counsel people with cerebral palsy. Medical personnel as well as professionals in other fields (including but not limited to sports and physical fitness, education, nutrition, sexuality, family and personal relationships, and career development) may have patients/clients who have difficulties with muscle control and speaking. People with a disability often cannot easily adapt to standard examining, testing, counseling and treatment procedures designed primarily for people without a disability.
The Roundtable discussions were marked by a sense of urgency. Participants keenly felt the lack of the resources to deal with problems associated with aging and they viewed the proceedings as an opportunity to find remedies for themselves and others. Discussions were often animated; as noted by one participant, "there is a lot of passion about these issues."
BACKGROUND
Up until roughly a decade ago, cerebral palsy was generally thought to be a nonprogressive disability, i.e., symptoms did not worsen over time, nor did new symptoms arise. As a result, the medical community frequently made little effort to diagnose and treat reported problems as a function of the disability. Adults who were encountering musculosketal, gastrointestinal, urologic and other problems for the first time were often told that nondisabled individuals entering middle age also faced similar difficulties.
But people with cerebral palsy persisted in their conviction that their physical problems were not consistent with a "nonprogressive" disability, nor could they be adequately explained simply as a function of the aging process. This belief, coupled with the recognition that people with polio (another disability once thought nonprogressive) often experience severe difficulties as they grew older, persuaded medical professionals to re-examine beliefs about the impact of the aging process on cerebral palsy.
The sometimes intuitive, often anecdotal, evidence that problems confronting an older person are not a simple, straight-line extrapolation of conditions experienced as a youth was buttressed by a path breaking survey of older individuals by Kathleen Lankasky of United Cerebral Palsy of Almeda/Contra Contas, California in {get date}. A 1993 national colloquium on aging by United Cerebral Palsy Associations generated wide-spread interest and provided a much needed foundation for future work. Several publications by the New York State Developmental Disabilities Planning Council (NYS Planning Council) provided impressive support for the thesis that aging often brings difficult physical problems for a person with cerebral palsy.
Participants drew upon these and other sources to compiles the agenda which is intended to serve as a guide to researchers and funding agencies hoping to alleviate some of the-age related problems experienced by people with cerebral palsy.
ADVISORY GROUP
The Roundtable was assisted by an advisory group consisting of representatives of aging and disability groups, as well as members of various university medical research organizations and federal agencies. Three members of the advisory group made presentations to the panel. Presenters, affiliation, and subject matter were:
** J. Paul Thomas, Coordinator, Clinical Practice Guidelines Consortium. Paralyzed Veterans of America; Developing Professional Guidelines for Spinal Cord Injuries.
** Dr. Murray Goldstein, Medical Director, United Cerebral Palsy Research Foundation: What do Foundations Look for in a Successful Proposal?
** Dr. Margaret Turk, Associate Professor, State University of New York; Research on Adults with Cerebral Palsy.
This report is not intended to be a detailed summary of the discussions during the two-day Washington meeting. The meeting was funded by a grant from the US Administration on Development Disabilities, Bob Williams, Commissioner.
AREAS OF CONCERN
This section draws upon the discussion at the Roundtable meeting and upon articles, research papers, other publications including the reports by the New York State Developmental Disabilities Council (NYS Council), and prior conferences on aging and cerebral palsy. Several Roundtable members attended previous conferences or contributed to the New York State reports, and the Roundtable meeting in Washington was in many ways was an evolution of previous inquires into the impact of aging on cerebral palsy.
As a first step in developing an agenda, participants listed over 100 areas of concern. They then condensed the list into major subcategories, and then each participant picked the four issues of greatest concern to them. The areas of greatest concern to the participants as a group are discussed below.
Exercise The inability to determine what type of exercise(s) is best suited to maintain cardio-pulmonary conditioning, physical strength, bone density, coordination, joint mobility and weight control is a major problem for people with cerebral palsy. Because stamina, coordination, muscle tone, balance and pulmonary capacity vary greatly, medical professionals are unable to make recommendations concerning the type, frequency and duration of exercise that would be beneficial for all persons with cerebral palsy. Of particular concern is the possibility that exercise may cause neuromuscular and/or joint problems.
The difficulty of defining exercise levels is particularly worrisome because of mounting evidence that many physical difficulties which accompany aging in the nondisabled population can be alleviated by exercise, and that people with cerebral palsy could realize similar benefits if appropriate exercise regimens could be developed. The benefits of exercise in alleviating depression was also noted, as was recent evidence suggesting that exercise may reduce the risk of certain forms of cancer. Several participants felt that all individuals should engage in some form of exercise regardless of the severity of cerebral palsy, and that exercise was particularly important for those individuals with severe cerebral palsy.
Participants indicated that the development of guidelines for individuals with spinal cord injury provided lessons that would be useful in developing exercise guidelines for people with cerebral palsy. Typically, guidelines are a consensus of experts in various fields (for exercise, these might be exercise physiology, orthopedics, rheumatology, rehabilitation and sports medicine) regarding best practices for areas in which there are no clear cut, well defined procedures.
Women's Issues The incidence of cerebral palsy in men and women is the same. However, the interaction between female hormonal functions and cerebral palsy has not been well studied. Many women were unable to find accurate information and competent medical care (including counseling) when they were younger. Young girls may have gender and identity issues which do not receive adequate attention because of the physical limitations. These can be exacerbated by health care workers and attendants who do not respect privacy in dealing with genital areas and breast development.
Changes in or abnormal menstrual cycles, for example, often go untreated. Menstrual flow pose difficult management issues especially in girls with leg contractures where positioning tampons or pads may require assistance from others further compromising privacy. Menstrual irregularities are not thought to be more common in girls with cerebral palsy as compared to other girls. However, because of the above issues unpredictable menstrual flow may cause embarrassment and also pose hygiene issues.
Reproductive health care is commoningly not taught to girls and young adults with cerebral palsy. Therefore, important issues such as safe sex, contraception, and breast self exam may never be dealt with. Stereotypical perceptions that these girls and women could not possibly be sexually active and also could not actively participate in preventive health care may be the root of these problems. Girls need to be educated to be assertive so that they can be more pro-active consumers of all services including health care services. Information about fertility and reproductive issues can be particularly difficult to find.
Woman with cerebral palsy frequently have difficulties obtaining routine PAP smears, breast examinations (mammography in particular) and rectal examinations. Medical examination equipment, as well as medical examiners, often cannot easily accommodate women who are spastic or women who cannot remain still for a significant period of time. Universally accessible examination tables such as one equipped with hand rails and padded roots with Velcro straps are helpful. If a specialized examination table is not available, adequate number of trained staff must be available in order to lift the women onto the examination table. Positioning for the exam must be modified in these cases. This assumes that offices and examining rooms are accessible, which is not always the case.
When medical problems are less than routine, women with cerebral palsy can very much at risk. In particular, women at the Roundtable and at prior gatherings on aging/disability, expressed concern about menopause and its manifestations. Very little information is available on changes in nutritional -1 needs that menopause may require. Additionally, few if any investigation are directed at the emotional changes and changes in energy levels that accompany middle-age.
Information about fertility and reproductive health issues (as well as doctors able to attend a woman during pregnancy) can be particularly difficult to find.
An area of particular importance mentioned at the Roundtable meeting was the sexual/reproductive concerns of women. Many women were unable to find accurate information and competent medical care (including counseling) when they were younger, and experiencing age-related changes for which virtually no assistance is available can devastating. Changes in or abnormal menstrual cycles, for example, often go untreated.
Quality of Medical Care Many participants felt that because few medical professionals are familiar with cerebral palsy, treatment for conditions specific to their disability is difficult to obtain. Many medical problems therefore go untreated, and many older persons feel that their disability prevented them for obtaining diagnosis and treatment of non-related conditions. As noted elsewhere in this report, women in particular often are unable to obtain cancer checkups and other screening procedures.
Both genders encountered problems finding dental care, a complaint being that some dentists (and medical professionals in other areas as well) are reluctant to treat patients that cannot remain immobile, or patients whose spasticity make routine examinations and treatment problematic. As a result, many older persons have periodontal disease.
1- The nutritional needs of all women and men with cerebral palsy is not treated in this report, but is a topic that arises frequently in any discussion of health needs. There is virtually no information about the nutrients that persons may require because of their disability. The question of diet is particularly important for older adults who have difficulty chewing and swallowing and/or are troubled with reflux. A related issue is metabolism, particularly the implications of a high metabolic rate.
Medical Problems that Worsen with Age Aging can bring pulmonary changes that impair breath control which in turn can make speech nearly inaudible. Older adults may also experience difficulties in the "motor" production of words and sentences. Speech can also diminish because the individual simply doesn't hear others; poor hearing is not uncommon among younger people and can worsen over time.
Many younger people have speech problems, and the physical difficulties that may arise later in life can add to the anger and frustration that comes with an inability to speak clearly for a meaningful length of time.
Augmentative communication can improve communication, but this technology may bring its own set of difficulties. Adults may be physically unable to manipulate a sophisticated device and emotionally unwilling to use a simpler, low technology device. Roundtable participants asked for research that would make devices easier to operate and or devised mays to ease the emotional reluctance to use a device that signals a major deterioration in the ability to speak.
Participants felt that arthritis and arthritic-like joint, which for some individuals began in their early 30's, was particularly worrisome. A growing number of people with cerebral palsy feel that some of the pain adults experience in knees, hips and shoulders stem from intensive childhood therapy, although participants admitted the lack of empirical evidence. One participant noted that the medical profession had no idea of the long-term consequences are of treatment current being given to children and young adults. Participants stressed the importance of research into the long-term physical impact of therapy as well as the advisability of stressing therapy over the use of scooters. Emotional and Psychological Issues The aging process, can cause anxiety in individuals with and without a disability. But aging can produce severe anxiety in those with cerebral palsy. The aging process begins early as over stressed muscles and joints wear out relatively quickly, and people in their 30's and 40's are often ill-equipped to deal with problems that their peers will often not encounter for two more decades. The gap between the physical ability of those with and without a disability can widen appreciably over time, and the realization that one is aging faster than others who are of the same age group can for some people can result in psychological problems far more difficult than physical limitations.
For some, aging intensifies problems that did not cause difficulties at a younger age. Participants noted that the facial expressions and body movement quickly indicate feelings of anger, frustration, amusement, or puzzlement. The resulting "loss of privacy" that may not be troublesome for younger people can be a severe problem for older persons, and may reinforce a tendency to isolate in older persons created by physical difficulties. Managed Care Managed care organizations have a mixed history of providing appropriate and timely services to individuals with disabilities. In addition, managed care includes many financial incentives that may not be congruent with the needs of individuals with disabilities or the philosophy of the disabilities movement as it has evolved over the last few decades. Participants were concerned that medical care would not be available from many health care organizations that lack personnel and medical equipment adequate to treat people with cerebral palsy. They suggested that financing and payment systems be established to create the types of incentives that will be responsive to individuals with disabilities. Parameters should be established for medical care and doctors should not be asked to give more time to patients if they are not going to be compensated, but patients should be sure that they receive the treatment for which they are paying.
Long-term supports and services may be at particular risk in a managed care environment. However, there is a strong need for the development of guiding principles by which any acute, long-term or integrated managed care plan or proposal for change could be evaluated. These include principles related to capacity and access; self-determination and choice; due process and consumer protection; quality of services and outcome issues; and community rather than institutional living. Carefully constructed recommendations on the above issues need to be fleshed out.
Dissemination of Research Dissemination of research findings is not a separate research category as are the five subject areas discussed above. Dissemination of findings, however, is an important component of research into any area of aging/cerebral palsy if the research is to produce beneficial results.
Contacting adults with cerebral palsy can be a difficult undertaking. They typically are not associated with independent living centers; if not associated with an United Cerebral Palsy affiliate through a recreation or work program, the affiliate may be unaware of their presence. Additionally, since many persons with cerebral palsy cannot find doctors knowledgeable about the disability, they are treated by doctors who may or may not keep abreast of new findings about aging/cerebral palsy.
Thus, the availability of research findings helpful for adults should be disseminated to ILC's, UCPA affiliates and other disability organizations, and professional organizations for medical personnel, but other channels should be sought as well. Postings on the internet is one such channel, as are local and regional disability publications and nationally circulated periodicals such as The Ragged Edge and Mainstream, and local papers, such as Horizons in the Washington DC metro area.
Regional Centers Improved dissemination of research was one of the factors that prompted several Roundtable participants to recommend establishment of a national network of regional centers whose functions would include outreach programs to disseminate clinical research results in the geographic areas served by each center. The centers would be able to take the information now being reported from basic research laboratories and translate it into clinical research studies of critical importance to the prevention of disability and the maintenance of improved performance
AGENDA ITEMS
A primary objective of the Roundtable meeting was the identification of areas in which research could be reasonably expected to clarify the impact of aging on people with cerebral palsy. The Roundtable also discussed a number of specific research inquiries, and also referenced other material developed by prior conferences on aging and cerebral palsy. The following list was developed from the Roundtable proceedings and from other sources, notably the publications of NYS Planning Council.
MEDICAL CARE
General
--what is a typical pattern of "successful aging;" do adults experience musculoskeletal or arthritic related pain earlier in the life cycle than does the general population;
--what are the typical secondary conditions developed by older adults and what programs can be developed for adults and for children to minimize the risk and impact of secondary conditions;
--what retirement supports can be provided to minimize the risk of isolation and deteriorating health due to secondary conditions;
--how does spasticity act as a risk factor for decreased function over time; what are the reasons for spasticity/ motor control worsening; what is the relationship between spasticity and pain as one grows older;
--what treatment strategies are most effective in alleviating feeding and swallowing problems over prolonged periods of time;
--what are the long-term implications of childhood therapies and/or medical and surgical interventions; what is the life- time impact of medication, orthopedic or neurosurgical procedures or conditioning activities;
--are adults at greater risk of developing age-related osteoporosis than the general public; how effective are intervention and treatment strategies for osteoporosis developed for the general population; Urologic Issues
--what are the risk factors for the development of urinary problems including infection; what are the best treatment options to promote bladder continence;
Gastroesophageal Reflux
--what are the etiology, the prevalence and the risk factors for gastroesophageal problems;
--what are effective treatment guidelines for problems with aspiration; what are effective treatment guidelines for problems with aspiration; how does the presence of scoliosis impact on gastrointestinal functioning;
--what are effective bowel-management protocols for older adults, taking into consideration the level of impairment; what techniques can be developed to provide for bowel and bladder continence;
Dental
--is the incidence of tooth decay, TMJ, malocclusion and other oral problems higher than for the general public; how can dental treatment strategies for the general population be adapted for children and adults;
Nutrition
--how does the regular daily allowance (RDA) for adults need to be modified; how does spasticity (and medicine taken to reduce spasticity), respiration problems, excessive fatigue, and swallowing difficulties and saliva loss impact the RDA;
WOMEN'S ISSUES
--how can reproductive information such as birth control, family planning, genetics, fertility, and satisfaction in sexual functioning be made more readily to women; --how should health care practitioners be advised and trained to provide a regular schedule of routine examinations related to reproductive health;
--do women experiences problems associated with menopause that are different from the general population;
SEXUALITY
--what supports can be provided to meet the physical and psychosocial sexuality concerns of older persons; how can personal care assistants be more effective in areas of sexuality and sexual functioning;
COMMUNICATION
--how do age-related changes in breath-control impact on the ability to talk;
--is the incidence of learning disabilities, especially in the areas of communication, speech and language disorders similar to that in the general population;
APPENDIX I - Bibliography Overeynder, J.C., Janicki, M.P. & Turk, M.A. (eds.). (1994). Aging and Cerebral Palsy -Pathways to Successful Aging: The National Action Plan. Albany: New York State Developmental Disabilities Planning Council.
Turk, M.A., Overeynder, J.C., & Janicki, M.P. (eds.). (1995) Uncertain Future - Aging and Cerebral Palsy: Clinical Concerns. Albany: New York State Developmental Disabilities Planning Council.
MEETING ON PHYSICAL ACTIVITY, WELLNESS AND HEALTH PROMOTION FOR PEOPLE WITH CEREBRAL PALSY
Participants:
Bob Williams, ADD Kate Seelman, NIDRR Murray Goldstein, UCP Research Foundation David Bauer, ADD Consultant David Brown, CDC Gail Evans, ADD
The meeting was held on July 21, 1997 to discuss next steps as a follow-up to the March 6-7 Cerebral Palsy Roundtable sponsored by the Administration on Developmental Disabilities (ADD).
Discussion:
Currently, there are no guidelines or principles related to the determinants of exercise for people with disabilities. Yet, research has determined there are numerous secondary benefits that result from exercise which include improved well being, reduction of cancer risks and maintenance of cardio-pulmonary functions. Murray's definition of exercise: exertion of energy against a force.
This activity dovetails with two initiatives currently underway in HHS. The first is the Surgeon General's Report on Physical Activity and Health which is the first scientific review of the relationship between physical activity and health, and its implications for improving the health of Americans. The Report includes a section on enhancing physical activity among individuals with disabilities which was written by Bob Williams. The second initiative is the current work that is being conducted to develop objectives for the Healthy People 2010 (which will include objectives for people with disabilities) planned for release in January 2000. The PHS uses the health promotion and disease prevention objectives to improve the health of Americans.
A decision was made to focus on the development guidelines for individuals with cerebral palsy during the initial phase of the project because: (1) cardiac disease is the leading cause of death among individuals with cerebral palsy and pulmonary disease is the second; (2) the number of individuals with cerebral palsy in the United States is small, approximately 500,000; and (3) cognitive functioning is generally within normal limits. It was noted that the principles developed could be generalized to other disabilities such as post-polio syndrome, spinal cord injury and osteoporosis.
David Brown mentioned a recently released book: Durstein, Larry, Exercise Management for Persons with Disabilities and Chronic Diseases. American College of Sports Medicine.
Recommendations:
1. Convene a three person planning committee to design and execute an interagency work group that develops guidelines for exercise, wellness and health promotion for people with cerebral palsy.
2. Convene a 2-3 day interagency (ADD, CDC, NIDRR, RSA, ASPE) work group of experts to develop principles that would serve as a guide for exercise, wellness and health promotion programs for individuals with cerebral palsy. The work group will include athletic trainers, rehabilitation engineers, nutritionists, experts in exercise physiology and kinesiology, ergonomics, therapeutic and preventive nature of disability and author, Larry Durstein. A working paper with exercise guidelines from a multi-disciplinary group of 15 experts will be developed as a result of the 2-3 day meeting.
A. The principles will be developed based on disease, performance and psychosocial models.
B. The principles will take into account issues around cardiopulmonary conditioning, obesity, stamina, coordination, female health, and play.
C. The principles will comprise both physical activity and more "formal" types of exercise such as those related to ADL that reinforce well-being and techniques to sustain it. D. The principles will encompass the needs of individuals using wheelchairs.
Potential activities following the work group meeting:
1. Collaborate with the YMCA to test the developed principles.
2. Evaluate and modify the principles as needed following test period.
3. Determine how the principles could be applied to other disabilities.
4. Develop and implement an outreach program to locate people with cerebral palsy.
5. Create a market for modified exercise equipment. The project will contain a dissemination component.
Next Steps:
1. Bob, David Brown and Don Lollar, CDC, will discuss the proposed activity by conference call.
2. Bob will convene a meeting with the above participants by September
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