Older adults with developmental disabilities

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29

Older Adults with Developmental Disabilities Toby M. Long, PT, PhD, FAPTA, Kathleen Toscano, MHS, PT, PCS

INTRODUCTION The population of individuals older than age 65 years is close to 13%.1 Included in this group are individuals with a developmental disability who up to a few years ago would not be expected to live to the age of 65 years, much less beyond that.2 Physical therapists are integral members of the team that serves individuals with developmental disabilities and will be expected to contribute to their care as they get older. A developmental disability is defined as a condition that occurs before age 22 years, continues indefinitely, is a substantial obstacle to the ability to function, and results in a functional limitation in three or more of the following: self-care, receptive or expressive language, learning, mobility, self-direction (or motivation), capacity for independent living, or economic self-sufficiency.3 This definition includes individuals with intellectual disabilities, cerebral palsy, Down syndrome, autism, and a host of other conditions that encompass a wide range of physical and mental changes that alter the functional abilities throughout the life span. The purpose of this chapter is to discuss the role of the physical therapist in providing intervention services to an older adult with a developmental disability. Covered specifically are the legislative mandates and philosophical underpinnings of providing services to this population, the unique aspects of aging in selected disability categories, the services rendered by the physical therapist, and the facilities where services may be provided. The U.S. Healthy People 20104 initiative targets the top American health care concerns. The two main goals of the U.S. Healthy People 2010 initiative are to increase the quality and numbers of years of healthy living and eliminate health disparities. People with disabilities are represented in the objectives used to track progress for these goals. Two other national initiatives, Closing the Gap: A National Blueprint to Improve the Health of Persons with Mental Retardation5 and the Surgeon General’s Call to Action to Improve the Health and

Wellness of Persons with Disabilities,6 focus on promoting a healthy lifestyle, healthy aging, and preventing further impairment, disability, and disease. Closing the Gap is a national campaign designed to help improve the health of people with intellectual disability. The goals of the Surgeon General’s initiative, Call to Action on Disability, are to: •

•

•

•

Increase understanding nationwide that people with disabilities can lead long, healthy, and productive lives. Increase knowledge among health care professionals and provide them with tools to screen, diagnose, and treat the whole person with a disability with dignity. Increase awareness among people with disabilities of the steps they can take to develop and maintain a healthy lifestyle. Increase accessible health care and support services to promote independence for people with disabilities.

Globally, the World Health Organization’s (WHO) program Healthy Aging—Adults with Intellectual Disabilities7 and four other WHO documents8-11 outline the key issues facing aging adults with developmental disabilities globally and offer specific recommendations to support healthy aging, including an emphasis on rehabilitation. Consistent with these prevention- and wellnessfocused initiatives, there has been a paradigm shift in how disability is viewed. The medical model, an impairmentbased model that regards disability as a biological abnormality requiring treatment, is being replaced with a social model. The social model conceptualizes disability as a condition that occurs primarily within the context of psychological, social, and environmental constraints that may interfere with functioning.12 This change in perception supports community-based programming that takes into consideration the needs, wants, and preferences of the individual.

Copyright © 2012, 2000, 1993 by Mosby, Inc., an affiliate of Elsevier Inc.

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Four major events occurred during the 1970s enabling the growth of community-based services and supports: •

• • •

Passage of the Intermediate Care Facilities/Mental Retardation Program of Title XIX (Medicaid) of the Social Security Act (1971)13; Landmark ruling on the right to treatment in the Wyatt v. Stickney case (1971)14; Passage of Section 504 of the Rehabilitation Act (1973)15; Passage of the Education for All Handicapped Children’s Act (now called IDEA) (1975).16

Building on these initiatives, several major legislative efforts were passed mandating that older persons with developmental disabilities be afforded services to meet their unique needs (Box 29-1). In addition, the Americans with Disabilities Act of 199019 ensures access to and participation in senior citizen centers, day care sites, and social service centers for individuals with developmental disabilities. Most recently, the Supreme Court22 ruled that the states are required to provide community-based services for those with intellectual disabilities if appropriate and if the individuals BO X 2 9 - 1

Legislation Affecting Services to Older Adults with Developmental Disabilities

Older American Act Amendments (OAA) 198717 • Mandated that older persons with developmental disabilities be served under the Act’s provisions • Mandated that the Administration on Aging (AOA) collaborate with the developmental disability service system to design and implement appropriate services • OAA programs were opened to older adults with developmental disabilities • Developmental Disabilities Bill of Rights and Assistance Act (1987)18 • Extended the provisions of the Developmental Disabilities Services and Facilities Construction Act of 1970 • Identified service delivery models to accommodate growth in population and need for trained professionals • Promoted community-based residential services Americans with Disabilities Act (ADA) (1990)19 • Provisions include access to and participation in senior citizen centers, day care sites, and social service centers for individuals with developmental disabilities The Domestic Volunteer Service Act (1975)20 • Authorized senior companions to assist adults with developmental disabilities • Omnibus Budget Reconciliation Act (1981)21 • Before admission to a nursing home, a screening must be performed for every person with a developmental disability • Annual review of every person with a developmental disability who resides in a nursing facility • Persons with developmental disabilities who are found to be inappropriately placed in a nursing home must be discharged

with disabilities agree to treatment in the community. Thus, legislation is in place which ensures that individuals with developmental disabilities are becoming members of the community at increasing rates.

DEMOGRAPHICS It is estimated that there are between 3.2 and 4.5 million individuals with sensory, mental, physical, or other developmental disabilities that impair their ability to effectively care for themselves.2 Of these, 641,000 are older than age 60 years, and this number is projected to double by 2030.2 According to Cooper et al,23 individuals with developmental disabilities represent about 1% of the population. Of these, 12% are older than age 65 years. As the number of individuals with developmental disabilities has grown, so has life expectancy. Life expectancy has increased by approximately 250% since the 1930s from 19 years of age to 70 years.24 Unless the individual has a significant disability such as Down syndrome, cerebral palsy, multiple disabilities, or a severe level of cognitive impairment, the life expectancy and age-related medical conditions of older adults with developmental disabilities are similar to that of the general population. In the population of older adults with developmental disabilities, women tend to outlive men by about 3 to 1.24 Surviving cohorts of women who have an intellectual disability are more often mildly or moderately impaired, whereas men tend to be severely impaired. The ratio of older men to women with cerebral palsy, however, tends to be higher than that found in the general population of individuals with developmental disabilities. Also, there exists an interaction between gender, age, degree of retardation, and longevity.24 Women with milder disabilities, such as mild intellectual disability, tend to live longer. Women with developmental disabilities present with unique considerations, placing them at greater risk for developing health-related problems than women without developmental disabilities. They receive significantly less preventive care than other women and lead very sedentary lives, which often results in greater risk for cardiovascular diseases. For example, participation in breast cancer screening is much less likely if the woman is older and has a disability or functional limitations.25 Whereas the majority of the general geriatric population live alone or with a spouse, the majority of older adults with a developmental disability live in varied types of community residences.26 Community-based residential facilities are designed as home-like living environments that combine supervision and care with support of a family or group setting. There are four basic types of community-based residential facilities: 1. Intermediate care facilities (ICFs): These provide the most intensive group home setting for individuals with health problems, multiple disabilities, or very



CHAPTER 29  Older Adults with Developmental Disabilities

limited daily living skills. No more than eight individuals reside together in this type of setting. 2. Community residencies (CRs): These are group home settings for individuals with moderate abilities to care for themselves. Individuals whose primary disability is moderate mental retardation or autism often reside in these facilities. Up to 12 adults may live together in a CR. 3. Supportive residencies: These are for individuals with a significant level of independence. These facilities are often apartments and usually consist of two to three “roommates.” Monitoring by a supervisor is done weekly or as needed. 4. Family care homes: These are for individuals of all degrees of disability. An individual resides with a family who has been trained and licensed to care for individuals with a developmental disability. In addition to these community-based residencies, older individuals with a developmental disability may reside in skilled nursing facilities, nursing homes, or private residential facilities for persons with developmental disabilities.

THE DEVELOPMENTAL DISABILITIES SERVICE SYSTEM Federal legislation passed since the 1970s supports the community-based model of care and provides systems to increase the likelihood that adults and older persons with a developmental disability will become integral members of the community. The system of services for the general population of older Americans, funded primarily through federal monies, is defined as an agebased service system, that is, the age of the individual determines eligibility for service. The services are designed focusing on the needs of the group of older citizens. In contrast, the service system for older adults with a developmental disability is considered to be needsbased and provides individualized, specialized services. Provisions for age-specialized models of service exist within this system, which is primarily state funded. The current focus of service provision is to bridge these two service delivery systems to encourage collaboration and joint planning between the systems to ensure that an individual’s needs are best met in the most efficient community-based manner as possible. This contemporary model of service provision has evolved from the “normalization” movement of the 1960s.27 This movement was grounded in the belief that individuals would develop optimally if they were integrated into society and afforded the same experiences as those without disabilities. The community-based model of care operationalized the normalization philosophy. By the mid-1970s states began to develop community-based residential and treatment programs. Individuals who had the opportunity to

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take advantage of these programs were more functional and independent than their counterparts in institutions and on some parameters than those living with their parents.28 Thus, the movement toward deinstitutionalization took hold, and by 1991 a nationwide movement took place to close all state-supported residential facilities and develop community-integrated living and vocational and leisure programming. As noted previously, legislation has been passed that supports the community-based model of care and provides systems to increase the likelihood that adults and older persons with a developmental disability will become integral members of the community. Thus individuals with developmental disabilities now live and receive the services and supports they need in their local communities. They are no longer relegated to institutional settings away from family, friends, and their community. Clients are now able to access a variety of appropriate service providers, such as physical therapists, through direct access or upon physician referral.

AGE-RELATED HEALTH CARE ISSUES SPECIFIC TO ADULTS WITH DEVELOPMENTAL DISABILITIES Obesity and Cardiovascular Disease Obesity affects individuals with all types of developmental disabilities. Research, however, has focused on individuals with an intellectual disability who have been found to have a higher incidence of obesity than adults without an intellectual disability. Yamaki29 estimated that the obesity rate for adults with intellectual disabilities was significantly higher than that of the general population at each of the four 4-year observation periods of the National Health Interview Survey. For instance, in the time period between 1997 and 2000, 36.4% of adults with intellectual disabilities were considered obese as compared to 20.6% of adults without intellectual disabilities.29 More recently, Rimmer and Wang30 found that the rate of obesity in people with intellectual disabilities was twice as high compared to that of the general population. Seventy percent of adults with Down syndrome and 60.6% of adults with intellectual disabilities were found to be obese. What is especially alarming is that extreme obesity was 4 times greater in adult individuals with Down syndrome (19%) and 2.5 times greater for adults with other forms of intellectual disabilities (12.1%) as compared to the general population. In addition to various health conditions such as hypertension, diabetes, heart disease, stroke, and stress, obesity also results in significant societal and personal limitations such as employment and leisure activities.31 As seen in the general population, obesity in older adults with intellectual disabilities results in higher medical costs for obesity-related chronic health conditions.32,33 Furthermore, it requires a greater effort on the

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part of caregivers to assist obese individuals with intellectual disabilities, thus placing caregivers at greater risk for health problems such as low back pain.31 Lack of physical activity, poor diets, and environmental factors have been linked to obesity in persons with intellectual disabilities.31 Cardiovascular disease (CVD) has also been found to affect those with developmental disabilities. As in the general population, CVD is the leading cause of death in those with an intellectual disability, except for those with Down syndrome.34 Factors that would indicate a higher CVD incidence in this population include longer life expectancy, physical inactivity, and higher dietary fat intake.34 The three most common types of developmental disabilities seen by physical therapists are intellectual disabilities, cerebral palsy, and Down syndrome. Until recently, little research had been conducted documenting the changes seen in individuals with these disabilities as they age. It was not until the mid-1980s that the medical community felt the need to conduct such research because up until that time, few individuals with disabilities lived beyond middle age. Longevity for individuals with Down syndrome and those with cerebral palsy is increasing. With increasing longevity, there has been a concomitant interest in the aging process for these individuals.

Down Syndrome Age-related changes in the behavior of individuals with Down syndrome have been documented.35-37 The age of onset of the decline and underlying reasons for this premature decline have yet to be determined. However, there is a growing body of literature that discusses two possibilities for this decline: Alzheimer’s disease36,37 and depression.38 Alzheimer’s Disease.  ​Although the exact incidence of Alzheimer’s disease in individuals with Down syndrome is unknown, an estimated 40% to 45% of these individuals between 50 and 70 years of age will develop Alzheimer’s disease. This incidence is three to five times greater than in the general population.36 Furthermore, the age of onset is much earlier in those with Down syndrome (age 35 to 45 years) than seen in the general population.36 Current research suggests a causative link between the excess material in chromosome 21 and apolipoprotein production and deposition—the neuropathologic finding seen in individuals with Alzheimer’s who are not developmentally disabled.36 Early symptoms of Alzheimer’s disease in older adults with Down syndrome are similar to those in the general population: loss of memory and logical thinking, diminished abilities to perform activities of daily living (ADLs), changes in gait and coordination, and loss of bowel and bladder control. Individuals with Down syndrome also develop seizure activity, a symptom not common in the

general population. It is recommended that individuals with Down syndrome receive psychological testing annually starting at age 30 years to determine and monitor loss of skills. Because of the known cognitive impairments of individuals with Down syndrome, declines in ADL skills may be a better indicator of Alzheimer’s disease than memory and cognitive loss.36 A checklist has been developed that can be used reliably to identify early signs of Alzheimer dementia in adults with Down syndrome.39 Other tools, such as the Adaptive Behavior Scale,40 the Client Development Evaluation Report,41 and the Vineland Adaptive Behavior Scales, Second Edition,42 also have been used to identify functional decline in individuals with Down syndrome. These tools have been found to be valid with this population. Depression.  ​There is indication that some individuals with Down syndrome are erroneously diagnosed as having Alzheimer’s disease when, in fact, they are depressed.38 Because depression is a treatable condition and Alzheimer’s disease is only manageable at this time, distinguishing between the two is important for caregiving purposes. The prevalence of depression in individuals with Down syndrome is between 6% and 12%.38 In addition to Alzheimer’s symptoms associated with other conditions such as hypothyroidism and hearing loss mask the identification of depression in individuals with Down syndrome. Although severely depressed individuals also show a loss of adaptive skills, the pattern of loss tends to be up and down rather than a continuous decline as seen in dementia. Also, individuals with depression respond positively to intervention and will regain skills that were once thought to have been lost. In addition to changes noted in adaptive skills, it is important to document changes in affective behaviors, such as sadness; crying; increases in self-injurious, assaultive, or aggressive behaviors; and somatic complaints.38,43 A framework that distinguishes among depression without dementia, depression with dementia, and dementia without depression is needed to guide rehabilitative interventions.38

Cerebral Palsy Little information exists on how the aging process affects persons with cerebral palsy, and there is no reason to suspect that cerebral palsy alters the genetically driven process of aging. Life expectancy for individuals with cerebral palsy has not been studied extensively. Of the studies conducted in the 1990s, data indicate that individuals with cerebral palsy who lack mobility, are severely or profoundly intellectually disabled, and cannot feed themselves have a decreased life expectancy.43 However, the chronic physical impairments and conditions associated with cerebral palsy may affect the onset or severity of age-related changes. Older adults with cerebral palsy are at high risk for secondary conditions that cause a loss of function and deterioration of their quality of life. Complications related



CHAPTER 29  Older Adults with Developmental Disabilities

to musculoskeletal changes including increasing scoliosis, contractures, hip subluxation or dislocation, pathological fractures, and pain contribute to a loss of independent living skills as individuals with cerebral palsy age. Lower extremity contractures are prevalent in individuals with cerebral palsy who do not walk (up to 91%) and can be problematic for transfers, positioning, hygiene, and skin protection.44 In addition, scoliosis appears to show a significant progression over time, which can lead to difficulty sitting and positioning, and has further effects on mobility, comfort, pelvic positioning, independence, skin integrity, and respiration.45 Pain, related to musculoskeletal dysfunction, overuse syndromes, and degenerative arthritis, is often reported in adults with cerebral palsy44 Sixty-seven percent of women within one community complained of pain greater than 3 months’ duration, 62% had daily pain, and 53% reported their pain to be moderate to severe in intensity.46 The most common areas of musculoskeletal pain are the hips, knees, ankles, and lumbar and cervical spine.46 In 2004, Jahnsen et al47 found that 33% of adults (aged 18 to 72 years, mean is 34 years) with cerebral palsy report chronic pain; this compares to 15% in the general population. They also found that pain was associated with low life satisfaction, deteriorating function, and chronic fatigue.48 Even though pain is reduced with intervention, most adults with cerebral palsy experiencing pain do not seek help from health care providers about their discomfort.49 In addition, it may be difficult for caregivers to fully appreciate and interpret nonverbal pain behavior from persons with severe cognitive and communication impairments.49 Thus, it is important to monitor individuals for behavioral changes that can be linked to pain, especially in older adults. The Pain Assessment Instrument for Cerebral Palsy (PAICP)50 was developed to assist practitioners in measuring the extent of pain experienced by nonverbal clients with severe cerebral palsy and a cognitive age of at least 4 years. The PAICP demonstrates adequate test– retest reproducibility and construct validity for use in measuring pain in this population.50 The instrument consists of six drawings of typically nonpainful daily situations and six drawings of activities that are typically painful. Respondents are asked to rate each activity as painful, not painful, or possibly painful. Use of this instrument may give physical therapists and caregivers a better understanding of those activities that provoke pain in these individuals. A consequence of chronic, unmanaged pain is a higher level of psychological distress.51 Individuals who experience chronic pain are often forced to change their lifestyle (i.e., reduce work hours, begin to use a wheelchair or other assistive device, or look for additional home services).52 Chronic pain is a significant and potentially life-altering problem for adults with cerebral palsy, negatively affecting work and daily life as well as functional skills and quality of life. This is a population that

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therapists who specialize in the area of pain management will want to reach out to ensure they receive appropriate service. Fatigue is another problem that is often reported by adults with cerebral palsy and is associated with diminishing functional independence.48 Adults with cerebral palsy report a higher rate of physical, but not mental, fatigue than the general population, and the number reporting fatigue increases with age. The greatest predictors that were associated with fatigue were low life satisfaction, bodily pain, limitations in emotional and physical role function, and deterioration of functional skills.48 Fatigue was not strongly associated with type of cerebral palsy; however, it was most prevalent in those reporting a moderate degree of motor impairment. These results reveal that physical fatigue is an issue in adults with cerebral palsy, it increases with age, and it has an impact on preserving functional skills and life satisfaction. Pain, fatigue, and musculoskeletal changes can ultimately lead to loss of function and independence. Very little information is available on diminishing independence in this population as they age. Work done in Sweden in 200052 indicates that 43% of the 221 adults with cerebral palsy who responded to a survey (61% return rate) had either decreased their walking ability or stopped walking by the age of 35. During the same time period, Buttos et al53 also found a significant decrease in walking ability in their sample of adults with cerebral palsy. Most lost their ability to walk between 20 and 40 years of age.53 In addition to the resultant problems directly related to the musculoskeletal impairments of cerebral palsy, women with cerebral palsy are more likely to be diagnosed with late-stage breast cancer than the general population.25 Women with cerebral palsy underuse mammography, often leading to delayed diagnosis of breast cancer and less favorable outcomes.25 Barriers to obtaining this service include lack of information about the benefits,54 transportation challenges, inability to be positioned appropriately55 in the mammography machine, communication challenges,56 and negative attitudes from staff.57 Appropriate services and knowledgeable service providers must be available to provide intervention that meets both the unique challenges presented by the population as well as the age-related health care challenges. Physical therapists are in an ideal position to consult with mammography technicians and instrument manufacturers in making mammography more accessible for adult women with cerebral palsy.

Intellectual Disabilities Intellectual disability is characterized by significant limitations in both intellectual functioning and adaptive behavior (conceptual, social, and practical skills).3 According to Krahn et al,58 the health status of

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many individuals with intellectual disabilities is adversely affected by a range of disparities, which if addressed, can improve health outcomes. Persons with intellectual disabilities have relatively high rates of epilepsy, behavioral/mental health problems, fractures, skin conditions, respiratory disorders, and poor oral health. Older adults with severe to profound levels of intellectual disability are at increased risk to die from intestinal obstruction, cardiovascular diseases, pneumonia, trauma, and other physical disabilities.59 There are also reported cases of unrecognized problems with vision and hearing and an unnecessary increase in the use of medications for psychiatric concerns.

EXAMINATION AND EVALUATION A key role of the physical therapist working with individuals with developmental disabilities is to comprehensively examine the patient/client because a comprehensive examination forms the basis for clinical decision making. The components of a comprehensive examination are described in the following text and listed in Box 29-2.

History Documenting pertinent history of the patient/client’s health and behavioral changes can help the therapist make decisions on the appropriateness of specific therapeutic strategies. In addition to the patient/client’s developmental disability, confounding problems such as congestive heart disease, hypertension, or diabetes also may be present. These comorbidities could influence recommendations or treatment strategies. It is likely that BO X 2 9 - 2

Components of a Comprehensive Physical Therapy Examination for an Individual with Developmental Disability

History Medical Surgical Therapeutic Intervention Medications Cognition Behavioral Response Neuromuscular Status Flexibility Strength Muscle tone Posture Endurance Functional Skills Balance Gait Activities of daily living Use of assistive technology

individuals with developmental disabilities, especially cerebral palsy, will have a history of surgical intervention. As multiple surgical procedures may lead to scarring and deformity, it is essential to document the time frame of when the surgery occurred and how it has affected the person over time. Medications for treatment of conditions directly related to the developmental disability and those related to additional conditions should be thoroughly documented. Long-term use of anticonvulsive medications may lead to physical findings such as ataxia and tardive dyskinesia60 or behavioral changes. Most individuals with a developmental disability will have had many years of various therapeutic interventions, and summarizing those interventions and their effects will prove invaluable for treatment planning. Documenting the use and effects of additional interventions, such as occupational therapy, special instruction, and therapeutic recreation that the client participates in, will assist in designing comprehensive programming that is collaborative—not redundant—with other disciplines.

Behavioral Response Individuals with a developmental disability, especially those with severe or profound intellectual disability, autism, or emotional disturbance, may demonstrate behavioral characteristics that can interfere with functional use of motor skills. Documentation of the person’s response to interactions and performance demands during the examination will assist with designing appropriate treatment plans. Documenting behavior also will help differentiate between behavioral characteristics that are consistent with the individual’s developmental diagnosis and with those that are consistent with aging or other disabilities or medical conditions, such as depression. Documentation of antecedents to a behavioral outburst or change in behavior will assist the team in designing appropriate interaction plans and behavioral support strategies. Also, the therapist should document the method used by the individual, for example, verbal, gestures, or sign language, to communicate needs.

Neuromusculoskeletal Status Traditional tests of neuromusculoskeletal status, such as manual muscle tests and goniometry, may not provide the information needed to make functionally oriented habilitation plans. The physical therapist should judge through observation the patient/client’s degree of flexibility, strength, and balance within activities that are functional for the individual. It is likely that the patient/ client may have long-term limitations in range of motion and decreased strength that he or she has learned to compensate for and do not contribute to his or her functional limitations. In addition, the therapist must be aware of the individual’s interests and activity level to determine whether an impairment results in functional



CHAPTER 29  Older Adults with Developmental Disabilities

limitation. For example, a person with an intellectual disability who swims on a regular basis may consider a decrease in shoulder range of motion a significant limitation over a person who does not swim. This same approach should be taken when examining endurance and muscle strength. Assessment of strength and endurance should be performed within the context of functional activities that are meaningful to the individual, are age-appropriate, and are consistent with the patient/ client’s desired outcomes. Table 29-1 outlines a variety of tools that are used to evaluate functional status of an individual with a disability and are discussed in depth

TA B L E 2 9 - 1

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subsequently. One of these tools, the Functional Outcome Assessment Grid (FOAG),61 also incorporates the assessment of neuromuscular components in the performance of specific functional activities.

Motor Function and Functional Activities Motor function skills are those that underlie activities that the individual does or would like to do on a regular basis and are meaningful to both the patient/client and caregivers. These skills are evident in examining mobility within the home and community and ADLs. Gait

Tools Commonly Used to Evaluate Functional Status and Assist with Program Planning in Individuals with a Severe Level of Disability

Tool

Purpose

Components

Functional Outcome Assessment Grid (FOAG)61

To determine performance factors that limit or support the accomplishment of specific functional tasks

Functional Skill Scale of the Pediatric Evaluation of Disability Inventory (PEDI)66

To determine functional capabilities and performance, monitor progress, and evaluate therapeutic or rehabilitative program outcome

Scales of Independent Behavior (SIB)–Revised67

To measure functional independence and adaptive functioning across settings Norm referenced and standardized for older adults

Supports Intensity Scale (SIS)66

To measure the practical supports needed by adults with intellectual disabilities in functional living areas by ranking activities according to frequency, amount, and type of support required

Performance areas: 1. Posture and alignment against gravity 2. Movement patterns 3. Movement of body in space 4. Secondary physical disabilities Administration: Direct observation of attempts to accomplish task. Components of each performance area are rated as to how intensely they influence the accomplishment of a functional task Functional Skill Scale subtests: 1. Self-care: eating, grooming, dressing, bathing, toileting 2. Mobility: transfers, indoors and outdoors mobility 3. Social function: communication, social interaction, household and community tasks Administration: Caregiver report, structured interview, or through observation. Environmental modification and amount of caregiver assistance is also systematically recorded. Adaptive behavior clusters: 1. Motor skills 2. Personal living skills 3. Social interaction & communication skills 4. Community living skills Problem behaviors: Support score predicts level of support required based on the impact of maladaptive behaviors on adaptive functioning. Functional limitations in adaptive behavior can be identified. Administration: Structured interview or checklist procedure. Identifies supports needed in: 1. Medical 2. Behavioral 3. Life activity Home living Community living Lifelong learning Employment Health and safety Social Administration: Comprehensive interview of patient/client and those who know him or her well.

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patterns and balance are components of motor function that influence mobility. Historically, older adults with developmental disabilities were administered developmental motor assessments that determined the developmental age level of their skill performance. It is inappropriate to test an adult with measures used to determine developmental skill level in children. It is, however, important to document skills that have been linked to functional activities and ADL (basic and instrumental), mobility, and recreation. In addition to the functional assessment tools widely used across a broad scope of health status (Katz Index of Independence in Activities of Daily Living,64 Functional Independence Measure,65 Older American Resources and Services,66 the Philadelphia Geriatric Center Multilevel Assessment Instrument67), older adults with developmental disabilities can be assessed more specifically using dimensions contained on the Pediatric Evaluation of Disability Inventory,62 the Scales of Independent Behavior–Revised,63 the Supports Intensity Scales,68 and the FOAG.61 Pediatric Evaluation of Disability Inventory.  ​The Pediatric Evaluation of Disability Inventory (PEDI)62 is a standardized, norm-referenced inventory that can be administered by caregiver report, structured interview with a caregiver, or through professional observation of a client’s behavior. The PEDI is divided into two scales. The Functional Skill Scale has three subtests: self-care, mobility, and social function. Environmental modification and amount of caregiver assistance is systematically recorded in the Modification Scale and Caregiver Assistance Scale. Although standardized on children from ages 6 months to 7 years 6 months, the items on the PEDI can be administered to older individuals to describe patterns of strengths and needs to assist with program planning. The Modification Scale and the Caregiver Assistance Scale also provide valuable information for program planning and documenting benefits from intervention aimed at decreasing the burden of care for an individual. Scales of Independent Behavior–Revised.  ​The Scales of Independent Behavior–Revised (SIB-R) measures functional independence and adaptive functioning in the school, home, and employment and community settings.63 It has been specifically designed to be used with children, adults, and the older adult population. The SIB-R is a norm-referenced test63 that has been standardized on individuals aged 3 months to 90 years and older. The full scale is divided into 14 subscales, which are organized into four clusters: motor skills, social interaction and communication, personal living skills, and community living skills. Of particular interest to the geriatric population are items related to domestic skills, such as homemaking and community orientation. The design of the SIB-R also allows comparison of an individual’s functional independence with cognitive status. A Screening Form and a Problem Behavior Scale are also part of the SIB-R package.

Supports Intensity Scale.  ​The Supports Intensity Scale (SIS) is unique in that rather than measuring ability or inability the SIS measures the support needed by an adult with a developmental disability in 57 life activities and 28 behavioral and medical areas.68 The assessment is completed through an interview with the patient/client and those who know him or her well. The SIS measures support needs in the areas of home living, community living, lifelong learning, employment, health and safety, social activities, and protection and advocacy. The scale ranks each activity according to frequency, amount, and type of support. Finally, a Supports Intensity Level is determined based on the Total Support Needs Index, which is a standard score generated from scores on all the items tested by the scale. The SIS is an excellent program planning tool, especially for those individuals who are known to have significant impairments and activity limitations. According to the manual, content validity, criterion-related validity, and construct validity were calculated using a variety of methodologies. All scores were intercorrelated, and coefficients exceeded the minimum level needed to demonstrate criterion-related reliability.68 Results indicate that the SIS is suitable for measuring unique characteristics of support needed by an individual and not abilities as measured by adaptive behavior scales or achievement tests and that the scores correlate with level of intelligence (the lower the intelligence quotient, the higher the level of support needed).68 Functional Outcome Assessment Grid.  ​The FOAG61 is based on the top-down model of assessing the influence of impairments on patient/client-specified functional outcomes. Using the desired outcome as the starting point, the therapist determines barriers to the accomplishment of the task and strengths that will assist the patient/client in accomplishing the task. Using this model, the purpose of the FOAG is to assist the team in implementing functional outcomes. The FOAG is individualized, based on team consensus of desired outcomes for the patient/client. Although there are six functional outcome areas that can be assessed, each area can be assessed independently. The six areas—caring for self, communication, learning and problem solving, mobility, play, and leisure—are associated with four disability categories: physical, sensory, special health care needs, and other. The patient/client is observed attempting the desired outcome, and the therapist rates component skills, such as muscle tone, strength, and flexibility, on a 5-point scale from no problem to significant problem that affects or prevents skill performance. Program plans are then designed that bypass obstacles, promote strengths, and/or improve deficits. This tool is an informal program-planning strategy, providing therapists with a systematic approach to link impairments and functional limitations to client-desired outcomes. Gait, Fall Risk, and Locomotion.  ​In addition to using specific assessment tools, documenting the gait pattern of the patient/client is important. Individuals with



CHAPTER 29  Older Adults with Developmental Disabilities

developmental disabilities, especially those with cerebral palsy, have well-documented gait deviations and neuromuscular impairments. Gait assessment should document those impairments but, more importantly, determine the functional limitation imposed by the gait deviations. It is preferred that a gait assessment be performed in various natural settings and over a variety of terrains to determine the impact of the gait characteristics on the ability of a person to maneuver functionally. As noted in the older adult population without developmental disabilities, the patient/client may show a decrease in speed of ambulation and an increase in energy expenditure as he or she ages. Increased energy expenditure may be more pronounced in individuals with postural deviations.69 Fall risk and balance also should be assessed. Again, traditional balance tools used with younger individuals with developmental disabilities, such as the ability to walk a balance beam or stand on one foot, may not be the most appropriate methods to determine balance in the context of function. Maintenance of balance within functional activities, such as individuals maneuvering in their own environments during routine activities, may be more helpful for program planning. Many balance tools have been found reliable and valid in detecting risk for falls in the general older adult population, but further research is needed to determine if these tests are valid in detecting fall risk in individuals with developmental disabilities.70-72 Bruckner and Herge73 found that modifying the Timed Up and Go test74 is a reliable method of determining fall risk in ambulatory older people with developmental disabilities. However, there was no correlation found between fall history and performance on the modified test. Using the Tinetti Performance-Oriented Mobility Assessment Tool,75 Adams et al76 found that the tool was a reliable way to assess mobility in individuals with intellectual disabilities. The use of observation to assess mobility was found to be the most useful aspect of the tool for those individuals with intellectual disabilities or behavior problems. There are also cognitive and injury risk assessment tools that could be helpful for falls risk assessment. These tools do not directly assess balance and gait, but because changes in cognition or mental status can be a risk factor for falls, use of tools that assess mental status may be helpful.77 A change of scores in the Mini-Mental State Examination (MMSE)78 was shown to predict falls for the general population as well as individuals with a cognitive impairment (odds ratio is 0.88 to 1.06).79 As seen in the general population of older adults, those with developmental disabilities who are at risk for falling have more than one factor contributing to that risk.73,80,81 Assistive Technology.  ​Many individuals with developmental disabilities use assistive technology. Assistive technology consists of simple adaptive equipment devices, such as adaptive spoons, to very complex computer-driven communication systems. The use of assistive technology

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may increase for adults with developmental disabilities as they become older. As seen in older adults without developmental disabilities, the use of mobility devices will increase. This is especially true for the use of wheelchairs for individuals with cerebral palsy. A thorough assessment of the fit and appropriateness of a wheelchair or ambulatory device should be part of a comprehensive examination. The assessment of the use of assistive technology should be performed within the environment that it is to be used. Assessing the devices also will require assessment of the environment to determine whether it is conducive for the size, shape, and weight of the device. Before a person is placed in a community residential facility, the physical therapist may be asked, as part of the team, to assess the environment to ensure appropriateness for an individual’s needs. The evaluation of an older adult with a developmental disability must be comprehensive and meaningful to the person’s activity level and living situation and must be individualized to meet specific needs. The therapist must consider the patient/client’s impairments, functional limitations, skill acquisition, environment, and desired functional outcomes in planning the evaluation strategies and procedures. Functionally based examinations are clinically useful.

PROGRAM PLANNING AND IMPLEMENTATION Individuals with developmental disabilities living in a community need access to supportive care providers and skilled health care clinicians who are knowledgeable about the person, the condition of the individual, and the system of services and supports available to them. Accessing appropriate services is challenging because of an array of disparities seen in the health, rehabilitation, and social service arenas. Older adults with developmental disabilities experience lower rates of preventive care and health promotion than that of the general population. A greater awareness of such disparities has resulted in numerous intervention programs and practices aimed at promoting successful aging in those with developmental disabilities. Person-based practices promote the health of persons with developmental disabilities by educating and supporting the individual in such areas as nutrition, physical activity, preventive care, rest, and the management of stress. The Healthy Lifestyles Curriculum,82 the Exercise and Nutrition Health Education Curriculum for Adults with Developmental Disabilities,83 and Women Be Healthy: A Curriculum for Women with Mental Retardation and Other Developmental Disabilities,84 although not developed specifically for the older adult, are structured, center-based health promotion intervention programs that have been shown to effectively change health behaviors in adults with developmental disabilities. The M.E.E. Calendar,85 a less structured

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approach, provides a variety of activities that can be done with older adults to promote fitness and activity, maintain language skills, and facilitate problem solving. Provider-based practices call for the standard and systematic inclusion of information on developmental disabilities within curricula for service providers.86,87 Professional organizations, such as the American Physical Therapy Association88 are including a variety of programs to increase knowledge and skill among their members. Policy-based practices have focused on creating a system of care to improve coordination among agencies providing services to those with developmental disabilities. Service coordination, interdisciplinary care, and interagency collaboration are receiving a great deal of attention. The Special Olympics Healthy Athlete89 program is one attempt to provide hearing, vision, and musculo­ skeletal screenings during the Special Olympics Games. In the United States, there has been a desire to increase communication between interagency and interdisciplinary groups for addressing mental health needs in people with intellectual disabilities.90 These practices recognize that adults with developmental disabilities are aging and with increasing life expectancies there will be a need for a greater array of comprehensive, integrated services.

Habilitation vs. Rehabilitation Older adults with developmental disabilities generally necessitate habilitation programs. Habilitation, as distinguished from rehabilitation, refers to services that assist an individual in gaining skills and abilities.91 Rehabilitation attempts to restore skills that have been lost as a result of injury or medical condition.91 Habilitation is required by law, under Medicaid regulations, and financed by Title 19 of the Social Security Act. Habilitation services for the older adult are generally provided by an interdisciplinary team. The Individualized Service Plan (ISP) is the document that records the outcomes, goals, and programmatic strategies decided by the team to be necessary for the client to attain or maintain an optimal level of independence. The interdisciplinary team is the team approach that is most commonly used with older persons with developmental disabilities.92 The team consists of various professionals, in addition to physical therapists—for example, occupational therapists, physicians, speech-language pathologists, nurses, psychologists, nutritionists, special education teachers, and social workers—who independently evaluate the individual and then meet together and share their findings with each other and the individual. Based on this information and the desired outcomes of the patient/client and caregivers, the team formulates a comprehensive plan that will best meet the needs of that individual. The role of the physical therapist on the team is determined by the needs of the client and the priority outcomes established on the ISP. The therapist may be a

direct provider of service, a consultant to other team members, or a monitor of programs carried out by direct care providers. Although individuals have long-term disabilities, the role of direct provider of physical therapy may be intermittent. The level of intensity will be related to the prioritized outcomes of the ISP or the need for services after an acute illness or injury. More often, the therapist may be an indirect provider of service. As a monitor of services, the physical therapist establishes functional goals that are consistent with the outcomes prioritized on the ISP and trains other individuals (usually direct care providers) in a specific program aimed at achieving goals. The physical therapist creates a data collection system for the person implementing the program and monitors the client’s progress at an appropriate frequency. Figures 29-1 and 29-2 are examples of simple data collection systems designed for individuals living in an intermediate-care facility. The data collection system must be very simple to increase the likelihood that it will be completed by the staff. Also, the staff carrying out the program implementation must be trained and supervised. Monitoring of the program data collection and intermittent retraining must be performed on a regular basis with adaptations to the program as necessary. The role of consultant requires the physical therapist to respond to specific requests of the patient/client, caregivers, or program staff. Unlike monitoring services, the physical therapist providing consultation is not directly responsible for the outcomes of the individual client. Goal: Tom will walk with his walker from the living room to his bedroom in 5 minutes. Date 4/1 4/2 4/3 4/4 4/5 4/6 4/7 4/8 4/9 4/10 Record time 10 10 9 10 8 9 8 8 7 8 in minutes Initial

FIGURE 29-1  ​Example of a simple data collection system identify-

ing a mobility goal and displaying the scores achieved over a 10-day period by Tom Charles, a 77-year-old man with mild-moderate level of intellectual disability and decreased endurance due to acute emphysema. Goal: Chris will transfer from a chair into his walker independently. Date 4/1 4/2 4/3 4/4 4/5 4/6 4/7 4/8 4/9 4/10 Assistance Y Y Y Y Y N N Y N N needed to steady the chair (Y/N) Assistance Y Y N Y Y N Y Y N N needed at arms to pull up to stand (Y/N) Initial

FIGURE 29-2  ​Example of a simple data collection system identify-

ing a mobility goal and displaying the scores achieved over a 10-day time period for Chris Allen, a 59-year-old with moderate spastic diplegia.



CHAPTER 29  Older Adults with Developmental Disabilities

The physical therapist is responsible for providing to the consultee information that is helpful to assist the patient/ client in meeting the outcomes. Case consultation focuses on the needs of an individual patient/client. The physical therapist, for example, may provide suggestions to a caregiver about how to involve a patient/client with cerebral palsy in leisure activities. Colleague consultation targets the needs of other service providers. Discussing with direct caregivers proper body mechanics to prevent back injury when transferring a patient/ client would be an example of colleague consultation. The purpose of system consultation is to effect system change, with the focus being on the service delivery system rather than a specific client. In-service training, program development, or evaluation are examples of system consultation. Regardless of the role the physical therapist takes in implementing the therapeutic program, an appropriate documentation system must be established. Documentation is important and should meet the needs of those involved in the program, third-party payers, and the service system (developmental disabilities or aging). If the therapist is acting as a direct service provider, progress and the response to intervention should be documented at each visit. The plan for future intervention also should be included. If service is being provided on an indirect basis, a system for documentation must be created for those implementing the program. Figures 29-1 and 29-2 provide examples of simple documentation systems. As indicated previously, this documentation should provide an objective measurement of the individual’s progress, and the system must be clear and concise so that it is not burdensome to caregivers. Therapists also must follow the regulations of the Medicaid and Medicare systems (see Chapter 30). Unfortunately, this may require duplication of documentation in various formats to meet the requirements of the various regulatory systems.

Resources Because the challenge of providing services to this population is an emerging area of service delivery, it may be helpful to consult current journals in geriatrics and developmental disabilities. Periodicals such as Intellectual and Developmental Disabilities, American Journal on Intellectual and Developmental Disabilities, and Journal of the Association for Persons with Severe Handicaps may be helpful. Topics in Geriatric Rehabilitation has recently published a special issue, Aging with a Developmental Disability. Also, the Administration on Developmental Disabilities has funded selected University Centers for Excellence in Developmental Disabilities to develop training and service programs specifically for older persons with developmental disabilities. These programs offer multimedia information and are available to train service providers in providing appropriate care to older

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adults with developmental disabilities (Box 29-3). The National Institute on Disability and Rehabilitation Research also funds a Rehabilitation Research and Training Center on Aging with a Developmental Disability at the University of Illinois at Chicago.

CASE STUDIES Case 1 Zachary is a 67-year-old man with mild-moderate intellectual disability and cerebral palsy of the spastic diplegic type, Gross Motor Function Classification System93 level 3-4. He is able to communicate verbally. He lives in an intermediate-care facility and attends a day treatment program. As a child, he walked with crutches and long leg braces. He had hamstring lengthenings and heelcord lengthenings at age 10 years and again when he was 14 years old. As he got older, he continued to walk with crutches but without the braces. By the time Zachary reached age 60 years, his gait had slowed considerably

BOX 29-3

University Centers for Excellence in Developmental Disabilities with Specific Programs for Older Persons with Developmental Disabilities

• Center for Child and Human Development, Georgetown University, Box 571485, Washington DC 20057-1485, 202-6872071. http://gucchd.georgetown.edu • Eunice Shriver Center, 200 Trapelo Road, Waltham, MA 02115, (617) 734-7509. http://www.umassmed.edu/shriver • Institute for Study of Developmental Disabilities, Indiana University, 2853 E. 10th St., Bloomington, IN 47408-2601, 812855-6508. http://www.iidc.indiana.edu • Institute for Human Development, University of Missouri-Kansas City, 22200 Holmes St., Third Floor, Kansas City, MO 64108, 816235-1770. http://www.ihd.umkc.edu • Mailman Center for Child Development, University of Miami, School of Medicine, P.O. Box 016820, D-820, Miami, FL 33101, 305-547-6635. http://www.ihd.umkc.edu • North Dakota Center for Developmental Disabilities, Minot State University, 500 University Ave. W, Minot, ND 58071, 701-8573580. http://www.ndcpd.org/ • Partners for Inclusive Communities, University of Arkansas for Medical Sciences, 2001 Pershing Circle, Ste 300, North Little Rock, AR 73114, 501-682-9900, http://www.uams.edu/ partners • Rehabilitation Research Training Center on Aging with Intellectual and Developmental Disabilities (RRTCADD, Department of Disability and Human Development (DHD); College of Applied Health Sciences, University of Illinois at Chicago (UIC) 1640 West Roosevelt Road, M/C 626, Chicago, IL 60608-6904, Phone: 312-413-1520. http://www.rrtcadd.org/About_Us/Home.html • Strong Center for Developmental Disabilities, University of Rochester Medical Center, 601 Elmwood Ave., Rochester, NY 14642, 716-275-2986. http://www.urmc.rochester.edu/pediatrics/divisions/ developmental_disabilities/index.cfm

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and he was encouraged to use a wheelchair by the staff at his day treatment program. A manual wheelchair was purchased for Zachary when he was 62 years old. By 67, Zachary had gained 17 pounds and his wheelchair needed to be replaced. The range of motion in Zachary’s legs had become more limited, making even stand-pivot transfers difficult. Planning and implementing a program appropriate for Zachary involved a comprehensive examination as previously described. Through an interview with Zachary and his caregivers, it was found that Zachary was somewhat depressed regarding his inability to walk. He also was found to have an interest in improving his ability to manage transfers to and from the toilet independently. The caregivers stated that Zachary enjoyed swimming and was independent in the shallow water at the pool. The information gained from the person-centered planning interview94,95 (Box 29-4) was enhanced by the structured interview of the SIS and the SIB-R. These data coupled with the information gained from the neuromuscular assessment allowed the therapist to create appropriate goals and a realistic plan that was driven by the outcomes identified through the person-centered planning process according to the desires of Zachary and his caregivers. The team decided that one outcome would be a return to independence in the bathroom. In order to regain independence in the bathroom, independence in stand-pivot transfers was one goal. To achieve that goal, the therapist instructed Zachary’s caregivers on performing transfers with the client and encouraging greater assistance from Zachary. The plan involved having Zachary practice this transfer each time he needed to use the bathroom. To create a program that was more likely to help Zachary reach his goals, the staff at the day treatment program also received training and agreed to follow the plan as designed. The therapist monitored progress weekly for 1 month and then monthly for another 2 months to ensure progression toward the goal. In addition, building on Zachary’s

BO X 2 9 - 4 • • • • • • • •

Key Elements of a Person-Centered Planning Interview

Respect the individual as a key informant Address questions to the client directly Maintain a conversational tone throughout the interview Clarify information with follow-up questions to the client first and then to other team members as needed Begin the conversation by eliciting information on the dreams and aspirations of the client Identify natural supports prior to determining professional services Focus on desired outcomes and capacities, not deficits or impairments Maintain a reflective, creative, positive environment where all members of the team contribute equally to problem solving

interest in swimming, the physical therapist in collaboration with the recreational therapist designed a swimming program that would (1) promote cardiovascular fitness and weight loss and (2) improve lower extremity strength. Both of these goals would assist him in reaching his stand-pivot goal as well. Activities included swimming laps and practicing standing and walking in the water. The recreation therapist monitored the program monthly with an agreement to contact the physical therapist with any questions or concerns. In collaboration with the team that included Zachary, his caregivers, the social worker, and physician, a new, appropriate wheelchair was prescribed and obtained for Zachary. The therapist assessed the wheelchair on a quarterly basis for safety, fit, and function. The therapist taught the staff appropriate wheelchair care and maintenance. Zachary and his caregivers were pleased with the program because it took into consideration everyone’s needs and Zachary’s desired outcome. Zachary was pleased because he was able to practice “walking” in the water, which he enjoyed. He was motivated to practice the stand-pivot transfer because he wanted to regain the ability to transfer independently. This intervention program proved to be quite successful. At the end of 3 months, Zachary had lost weight; was able to complete a standingpivot transfer with only stand-by assistance; and his new wheelchair was modern and streamlined, allowing him to maneuver in his home more efficiently. The success of this program was due to the collaboration among all team members including Zachary and the fact that it was based on Zachary’s desired outcomes. The physical therapist, in collaboration with her team members, successfully monitored his program and consulted with daily caregivers and Zachary.

Case 2 Lisa is 71 years old and has a diagnosis of mild intellectual disability. She lives in a supervised apartment with two other older women and attends an integrated adult day care program at a local nursing home. Lisa ambulates independently on all surfaces including stairs. She is independent in ADLs. She is able to take a bus to a destination, after she has been shown three to four times. Lisa has always enjoyed riding a stationary bike, but her knees and hips have begun to bother her. She has been diagnosed as having osteoarthritis, and her physician suggested that she find an alternate activity to replace the stationary bike riding. The community in which Lisa lives funds her residential program as well as her day program through the state Medicaid program. Medicaid programs for adults with developmental disabilities in her state (as in many) require that a physical therapist be a member of the team and available to consult with the client, any caregivers, or administrative staff as appropriate. Being a



CHAPTER 29  Older Adults with Developmental Disabilities

direct-access state, the physical therapist received a referral from Lisa’s home supervisor to consult with the team regarding Lisa and the suggestion that she find an alternative to stationary bike riding. Upon interviewing Lisa and the supervisors, it was discovered that Lisa once enjoyed swimming, but since she had moved to this apartment 7 years ago, there had been no opportunity for this activity. Following a chart review, a systems review, and a screening for strength, balance, and ambulation ability, the physical therapist determined that Lisa was not in need of his direct services but he felt that she could benefit from a non–weight-bearing exercise program to avoid knee pain. The physical therapist collaborated with the apartment supervisor, recreational therapist, and social worker to involve Lisa in a regular swimming program at the local indoor pool at the community fitness center. The social worker found a companion to accompany Lisa on the bus to the pool. The recreation therapist arranged with the staff at the pool to have Lisa participate in a water aerobics class. The adult day care staff were made aware that Lisa would be coming in late on Wednesdays and Fridays—the days she would participate in the aerobics program. The physical therapist was available to consult with the home care providers, recreation therapist, and pool staff, if necessary. Lisa and the staff were pleased with the progress. Lisa experienced a problem often seen in the aging population, but her developmental disability made it difficult for her to access appropriate care and activities. The therapist in consultation with other members of the interdisciplinary team found an activity that Lisa enjoyed and created an effective program for her. Through a collaborative effort, a program was implemented that met the patient/client’s needs.

SUMMARY Information regarding aging individuals with developmental disabilities has recently begun to receive attention in the literature.94,95 Older persons with developmental

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disabilities have begun to be recognized by service providers and policy makers as a large heterogeneous group who require specialized services integrated into the service system of the general population of older adults. This chapter reviewed the legal mandates and social policy impetus guiding service to this group. The role of the physical therapist in examining individuals and assisting team members with designing appropriate, holistic habilitation plans was presented. Although little information is available on specific aspects of the aging process in adults with developmental disabilities, aspects of aging in persons with Down syndrome and cerebral palsy were discussed. Physical therapists are in a unique position to assume leadership roles in the care of older adults with developmental disabilities and develop integrated programs of habilitation. In addition, a critical role for physical therapists will be to design and foster leisure skill programming for these persons that will promote and maintain functional skills. Physical therapists also are in a position to effect system change, specifically recognizing the importance of leisure skill programming and creating reimbursement strategies that will take leisure skill programming into consideration.

REFERENCES To enhance this text and add value for the reader, all references are included on the companion Evolve site that accompanies this text book. The reader can view the reference source and access it online whenever possible. There are a total of 95 cited references and other general references for this chapter.