Workshop on Disability in America A New Look: Summary and Background Papers (2006) / Chapter Skim
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Appendix K A User’s Perspective on Midlife (Ages 18 to 65) Aging with Disability--June Isaacson Kailes
Appendix K A User’s Perspective on Midlife (Ages 18 to 65) Aging with Disability--June Isaacson Kailes
Pages 194-204
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From page 194... ...
Our choices, if we are lucky, are to see pediatricsfocused health care professionals with teddy bears on their business cards or geriatrics-focused health care providers who sometimes incorporate a multidisciplinary team approach. I write this paper from the perspective of someone who is a living, aging-with-disability "laboratory." My life-long disability is cerebral palsy.
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From page 195... ...
However, this work has not translated into effective interventions. For many of us, maneuvering through the complex health care system is a dense minefield full of • physical, communication, program, and medical equipment barriers; • "no-logic" bureaucracies; • professionals with few, if any, specific competencies in treating disabling conditions; • fragmented and dysfunctional services; and • a lack of focus on living well with long-term disability and conditions.
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From page 196... ...
Given the approaching wave of the baby boom generation, people who live with disabilities today are truly "the canaries in the health care mine." As people age, disability rates rise significantly. Most people, if they live long enough, will age into disability.
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From page 197... ...
• Medical equipment that needs to be usable by people with disabilities and activity limitations includes weight scales, examination tables (whose height should be adjustable) , examination chairs, and other diagnostic and radiological equipment that facilitates access to routine care, preventive care, diagnostic tests, and necessary treatments.
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From page 198... ...
REFORM HEALTH CARE POLICIES AND BENEFITS Many of the following policy comments reflect an underlying message: "pay now or pay more later." An initial denial of services because of antiquated and shortsighted policies and inaccessible medical facilities and equipment subsequently results in the use of more expensive services downstream. Health care policies that affect the access to health care of people with disabling conditions and activity limitations originate from an era when many people with disabilities did not age; they just died.
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From page 199... ...
play in preventing or reducing secondary conditions and injuries must be recognized. This includes, but is not limited to, hearing aids, grab bars and other safety devices, railings, canes, magnifiers, buttonhooks, speech synthesizers, augmentative communication devices, powered mobility devices, magnification equipment, sophisticated prosthetic limbs, environmental control units, powered and lightweight wheelchairs, and voiceoutput blood glucose meters.
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From page 200... ...
For example, people with multiple and complex health issues, including individuals who are living with several conditions, such as emphysema, diabetes, heart conditions, obesity, arthritis, and high blood pressure, are often overwhelmed and lost in a fragmented system. Elements of care coordination of particular importance to many people with disabilities include fostering of a person-centered approach that honors the goal of achieving maximum self-determination while supporting independent living values, such as dignity, independence, individuality, privacy, and choice.
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From page 201... ...
Evaluations should center on the whole person and should consist of • assessments by a multidisciplinary team of health care professionals who effectively solve problems together (as needed, a nurse, physician, physical therapist, occupational therapist, orthotist, social worker, mental health professional, care coordinator, fitness specialist, dentist, optometrist, and others) ; • technology-specific tune-ups, which involve health education; preventive strategies regarding repetitive stress; and muscle underuse, overuse, and misuse injuries; as well as any safety product recalls; • nutritional and fitness assessments; • an optional on-site workplace assessment that covers areas such as seating and ergonomics; • assessments and plans for preventing known health complications secondary to a disability and for preserving functional abilities with a focus on anticipating how such abilities may change with age; • an easy-to-understand report that is given to the patient along with an individual health and wellness plan that is reviewed annually, revised as needed, and developed in partnership with the individual and the health care team; and • fully funded follow-up services for the individual's health and wellness plan.
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From page 202... ...
In addition, research needs to • validate or disprove the merits and cost-effectiveness of periodic comprehensive evaluations; • be reality based and focus on what can be accomplished to improve care given limited health care resources; • focus on methods and models that will help reorient and transform the approach in health care that too often equates disability, chronic conditions, and activity limitations with an inability to work; • focus on the prevention and mitigation of secondary and associated conditions; the research (reviewed by others) documents the prevalence of common secondary conditions like pain, depression, obesity, and fatigue across disability groups; • focus on functional limitations; given the complexity and diversity of disability and the low prevalence of many conditions, research should focus on functional limitations across disabilities and not discrete diagnostic groups (for example, people with cerebral palsy have some characteristics in common, but variations in abilities and limitations manifested in vastly different ways are more common)
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From page 203... ...
• What is the impact of exercise and activity on the functional independence and overall health status of individuals with physical disabilities? • give greater focus to ways of promoting healthy living with a disability that have direct, immediate, and practical applications.
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From page 204... ...
That is, if more generous benefits are available, unimaginable numbers of beneficiaries will emerge "from the woodwork" to seek the service. Is there any validity to the use of the woodwork effect by policy makers and insurance carriers as an excuse not to improve policy?
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