The Continuum of Care for Individuals With Lifelong Disabilities: Role of the Physical Therapist

Many individuals with lifelong disabilities (LLDs) of childhood onset are living longer, participating in adult roles, and seeking comprehensive health care services, including physical therapy, with greater frequency than in the past. Individuals with LLDs have the same goals of health and wellness as those without disabilities. Aging with a chronic LLD is not yet well understood; however, impairments such as pain, fatigue, and osteoporosis often present earlier than in adults who are aging typically. People with LLDs, especially those living with developmental disabilities such as cerebral palsy, myelomeningocele, Down syndrome, and intellectual disabilities, frequently have complex and multiple body system impairments and functional limitations that can: (1) be the cause of numerous and varied secondary conditions, (2) limit overall earning power, (3) diminish insurance coverage, and (4) create unique challenges for accessing health care. Collaboration between adult and pediatric practitioners is encouraged to facilitate smooth transitions to health practitioners, including physical therapists. A collaborative client-centered emphasis to support the transition to adult-oriented facilities and promote strategies to increase accessibility should become standard parts of examination, goal setting, and intervention. This perspective article identifies barriers individuals with selected LLDs experience in accessing health care, including physical therapy. Strategies are suggested, including establishment of niche practices, physical accessibility improvement, and inclusion of more specific curriculum content in professional (entry-level) doctorate physical therapy schools.

[1]  W. Nehring,et al.  Promoting health care transitions for adolescents with special health care needs and disabilities , 2007 .

[2]  M. Aisen,et al.  Adults with cerebral palsy: a workshop to define the challenges of treating and preventing secondary musculoskeletal and neuromuscular complications in this rapidly growing population , 2009, Developmental medicine and child neurology.

[3]  R. C. Barnhart,et al.  Aging and Down Syndrome: Implications for Physical Therapy , 2007, Physical Therapy.

[4]  Amanda C. Chow,et al.  United Cerebral Palsy , 2014 .

[5]  S. Ueda,et al.  Functional deterioration in adults with cerebral palsy. , 2000, Clinical rehabilitation.

[6]  E. Mattsson,et al.  Adults with cerebral palsy: walking ability after progressive strength training , 2003, Developmental medicine and child neurology.

[7]  Arve Opheim,et al.  Walking function, pain, and fatigue in adults with cerebral palsy: a 7‐year follow‐up study , 2009, Developmental medicine and child neurology.

[8]  M. Field,et al.  The Future of Disability in America , 2007 .

[9]  Henk J Stam,et al.  Perceived barriers to and facilitators of physical activity in young adults with childhood-onset physical disabilities. , 2009, Journal of rehabilitation medicine.

[10]  Alicia Bazzano,et al.  The Healthy Lifestyle Change Program: a pilot of a community-based health promotion intervention for adults with developmental disabilities. , 2009, American journal of preventive medicine.

[11]  N. Lennox,et al.  Healthy Ageing – Adults with Intellectual Disabilities: Physical Health Issues , 2001 .

[12]  D. Mclone,et al.  The changing incidence of myelomeningocele and its impact on pediatric neurosurgery: a review from the Children’s Memorial Hospital , 2009, Child's Nervous System.

[13]  J. Perrin Health services research for children with disabilities. , 2002, The Milbank quarterly.

[14]  R. Palisano,et al.  Performance of Physical Activities by Adolescents With Cerebral Palsy , 2007, Physical Therapy.

[15]  C G Gajdosik,et al.  Secondary Conditions of the Musculoskeletal System in Adolescents and Adults with Cerebral Palsy , 2002, Physical & occupational therapy in pediatrics.

[16]  R. Aungst,et al.  Healthy People 2020 , 2013, American Journal of Kidney Diseases.

[17]  K. Ono,et al.  The cervical spine in athetoid cerebral palsy. A radiological study of 180 patients. , 1996, The Journal of bone and joint surgery. British volume.

[18]  M. Block,et al.  Physical activity and youth with disabilities: barriers and supports , 2013 .

[19]  A. Rosenberg,et al.  Promoting Community Recreation and Leisure , 2003, Pediatric physical therapy : the official publication of the Section on Pediatrics of the American Physical Therapy Association.

[20]  B. McGrath,et al.  Health care transitions among youth with disabilities or special health care needs: an ecological approach. , 2010, Journal of pediatric nursing.

[21]  T. Strax,et al.  Aging and developmental disability. , 2010, Physical medicine and rehabilitation clinics of North America.

[22]  L. Iezzoni,et al.  Structural impairments that limit access to health care for patients with disabilities. , 2007, JAMA.

[23]  H. Hosalkar,et al.  Orthopaedic issues in the musculoskeletal care of adults with cerebral palsy , 2009, Developmental medicine and child neurology.

[24]  Ramon B. Zabriskie,et al.  Influence of adapted sport on quality of life: Perceptions of athletes with cerebral palsy , 2009, Disability and rehabilitation.

[25]  J. Center,et al.  People with mental retardation have an increased prevalence of osteoporosis: a population study. , 1998, American journal of mental retardation : AJMR.

[26]  G. Chard International Classification of Functioning, Disability and Health , 2004 .

[27]  N. Young,et al.  What do we really know about the transition to adult-centered health care? A focus on cerebral palsy and spina bifida. , 2007, Archives of physical medicine and rehabilitation.

[28]  B. Kemp,et al.  What the rehabilitation professional and the consumer need to know. , 2005, Physical medicine and rehabilitation clinics of North America.

[29]  J. Gorter Transition to Adult-Oriented Health Care: Perspectives of Youth and Adults with Complex Physical Disabilities , 2009, Physical & occupational therapy in pediatrics.

[30]  M. Durkin,et al.  The role of migration and choice of denominator on the prevalence of cerebral palsy , 2013, Developmental medicine and child neurology.

[31]  A. Vianello,et al.  Functional status of adults with cerebral palsy and implications for treatment of children , 2001, Developmental medicine and child neurology.

[32]  Russell S Kirby,et al.  Prevalence of cerebral palsy, co‐occurring autism spectrum disorders, and motor functioning – Autism and Developmental Disabilities Monitoring Network, USA, 2008 , 2014, Developmental medicine and child neurology.

[33]  J. Perrin 2. Health Services Research for Children with Disabilities , 2002 .

[34]  Amy Rauworth,et al.  Accessibility of health clubs for people with mobility disabilities and visual impairments. , 2005, American journal of public health.

[35]  J. Rimmer,et al.  Physical fitness levels of persons with cerebral palsy. , 2001, Developmental medicine and child neurology.

[36]  K. Dodd,et al.  Strength training can be enjoyable and beneficial for adults with cerebral palsy , 2004, Disability and rehabilitation.

[37]  D. Lotstein,et al.  Current Status of Transition Preparation Among Youth With Special Needs in the United States , 2013, Pediatrics.

[38]  Elena M. Umland,et al.  A Common Language for Interprofessional Education: The World Health Organization's International Classification of Functioning, Disability and Health (ICF) , 2013 .

[39]  S. Kadoya,et al.  Cervical spondylotic radiculo-myelopathy in patients with athetoid-dystonic cerebral palsy: clinical evaluation and surgical treatment. , 1984, Journal of neurology, neurosurgery, and psychiatry.

[40]  W. Hammerstein,et al.  Pathogenesis , 1869, The Chicago Medical Journal.

[41]  S. Schrader,et al.  2008 Disability Status Report: The United States. , 2010 .

[42]  J. Rimmer,et al.  Health promotion for people with disabilities: the emerging paradigm shift from disability prevention to prevention of secondary conditions. , 1999, Physical therapy.

[43]  T. Egeland,et al.  Locomotion skills in adults with cerebral palsy , 2004, Clinical rehabilitation.

[44]  Mimi Y. Kim,et al.  Motor stereotypies in children with autism and other developmental disorders , 2009, Developmental medicine and child neurology.

[45]  K P Murphy,et al.  MEDICAL AND FUNCTIONAL STATUS OF ADULTS WTH CEREBRAL PALSY , 1995, Developmental medicine and child neurology.

[46]  P. Rosenbaum,et al.  Exploring Issues of Participation Among Adolescents with Cerebral Palsy: What's Important to Them? , 2011, Physical & occupational therapy in pediatrics.

[47]  S. Palsbo Disability Competent Health Systems , 2006 .

[48]  Robert W. Flexer,et al.  Transition Planning for Secondary Students with Disabilities , 2000 .

[49]  T. Seekins,et al.  Assessing secondary conditions among adults with developmental disabilities: a preliminary study. , 2002, Mental retardation.

[50]  J. Rimmer,et al.  Barriers to exercise in African American women with physical disabilities. , 2000, Archives of physical medicine and rehabilitation.

[51]  K. Dodd,et al.  Effects of a community-based progressive resistance training program on muscle performance and physical function in adults with Down syndrome: a randomized controlled trial. , 2008, Archives of physical medicine and rehabilitation.

[52]  Christina Andersson MSc Pt,et al.  Adults with cerebral palsy: a survey describing problems, needs, and resources, with special emphasis on locomotion , 2001 .

[53]  E. Fotiadou,et al.  EFFECT OF TRAINING ON THE MUSCLE STRENGTH AND DYNAMIC BALANCE ABILITY OF ADULTS WITH DOWN SYNDROME , 2004, Journal of strength and conditioning research.

[54]  R. Kirby,et al.  Updated National Birth Prevalence estimates for selected birth defects in the United States, 2004-2006. , 2010, Birth defects research. Part A, Clinical and molecular teratology.

[55]  S. Reiter,et al.  Psychosocial effects of reverse-integrated basketball activity compared to separate and no physical activity in young people with physical disability. , 2013, Research in developmental disabilities.

[56]  Demographic Characteristics of Persons with MR / DD Living in Their Own Homes or With Family Members : NHIS-D Analysis , 2001 .

[57]  J. R. Scotti,et al.  Available From , 1973 .

[58]  M. Peterson,et al.  Chronic disease risk among adults with cerebral palsy: the role of premature sarcopoenia, obesity and sedentary behaviour , 2013, Obesity reviews : an official journal of the International Association for the Study of Obesity.

[59]  S. A. Larson Characteristics of and service use by persons with MR/DD living in their own homes or with family members: NHIS-D analysis , 2001 .

[60]  S. Deb,et al.  Comparison of rating scales for the diagnosis of dementia in adults with Down's syndrome. , 2001, Journal of intellectual disability research : JIDR.

[61]  T. Park,et al.  Disbanding a multidisciplinary clinic: effects on the health care of myelomeningocele patients. , 1994, Pediatric neurosurgery.