Independent Living Research Utilization
Information for Providers of Managed Care[The following information was adapted from original material
provided by Healthcare Matters!
Understanding Disability Because individuals with disabilities have different needs, sometimes simple up-front accommodations can have valuable long term effects. Often such accommodations are seen as unnecessary or not meeting medical necessity determination thresholds and may have been denied within both the traditional or new managed care delivery systems. When accommodations are viewed as opportunities that can prevent the future need for more expensive services/ interventions, their worth becomes much more significant to the consumer, the provider and the health plan. The earlier accommodations are made, the better the goals of managed care will work for individuals with disabilities. Here are some ideas that you, as a health services provider, could ask an individual or family member when identifying the accommodations or services that would influence an individual's level of independence: Does your disability place limitations on your activity level? What accommodations/adaptations do you require to perform activities of daily living? Do you use or need any assistive equipment? What type of equipment? If you have equipment, do any changes need to be made to the equipment? If you use a wheelchair, are you still able to find a comfortable position in it? Does it meet your present needs? How old is it? Are you currently receiving health, social or long term care services or therapies? From which providers do you receive those services? Are there equipment or services that you don't receive but feel are necessary? Do you need any accommodations or special services, such as:
Do you usually bring a support person to your appointments? What is that person's name? Do you need personal assistance to complete daily tasks/activities? If you have no specific support services and have relied on family members or friends to routinely assist you, do your family members and/or friends need a break, i.e., respite services? Do you use public transportation services? Are they accessible to you if you chose to use them? Do you need special transit services as a part of your managed care services?
Providers of health care services want consumers to feel welcomed and comfortable when accessing and receiving services. Consumers want the office space of providers to be safe and convenient. Consumers want the health care staff to be concerned about their needs. The purpose of the following guidelines is to make providers aware of common practices and more comfortable in conversing with and serving individuals with disabilities. These guidelines are not just for doctors and nurses, but apply to all providers with whom consumers with disabilities interact. General Reminders If you think someone needs help, ask. It is always okay to ask; it is not okay to assume. Ask how to be of assistance, then follow the person's instructions. Always speak to the person you are addressing, not to a companion or interpreter. Do not worry about using expressions that could be interpreted as disability-related puns, such as "got to run" or "see what I mean?" These are part of our common language and are not offensive. When speaking or writing, put the person first: person with a disability, person with cerebral palsy, etc. People with Wheelchairs The need for a wheelchair is not related to intelligence or cognitive ability. A wheelchair is part of an individual's personal space. Respect that space. It is not polite to touch or lean on a wheelchair without the user's permission. If a person transfers from a wheelchair to a chair, barstool, bathtub, or toilet, don't move the wheelchair beyond easy reach. Always make sure that a chair is locked before helping a person transfer. When talking with a person in a wheelchair, sit or place yourself at that person's eye level. If you are walking with a person using a manual wheelchair, ask the individual if he/she wants assistance before you push the wheelchair. People with Visual Impairments Visual impairments are not related to intelligence or cognitive ability. When meeting with a person with a visual impairment, announce yourself and introduce anyone else who may be with you. Inform the person with a visual impairment when you are leaving. When offering a chair to a person with a visual impairment, place the person's hand on the back or arm of the chair. Do not pet or speak to a person's guide dog. Guide dogs are at work, even when sleeping under their owner's chairs. People with Hearing Impairments Hearing loss is not related to intelligence or cognitive ability. To get someone's attention, touch that person lightly, wave or use another physical sign. Do not be embarrassed to rely on written notes. Written notes promote effective communication. Lip reading can be an invaluable aid to a person who is deaf. When speaking, face a person with hearing loss directly, enunciate clearly (but without exaggeration) and don't expect to be perfectly understood. Not all spoken language is understood through lip reading. Do not speak louder than usual to a person who is deaf. People with Speech Impairments Speech impairments are not related to intelligence or cognitive ability. If you have difficulty understanding someone's speech, do not be afraid to ask for multiple repeats. Never pretend to understand when you do not. Do not be embarrassed to rely on written notes. Written notes promote effective communication. Most people with speech impairments can hear. Loud or simple words are not easier to understand. People with Mental Retardation Mental retardation is not the same as mental illness. Persons with mental retardation have varying degrees of cognitive ability. Most persons with mental retardation can read, write, think and lead productive, independent lives with varying amounts of support and/or assistance. Only a minority of persons with mental retardation need constant support services. People with mental retardation are legally competent, absent a court finding (such as guardianship) to the contrary. They are entitled to fully participate in their health plan, including giving informed consent. Some persons with mental retardation have guardians to assist them in areas identified in the guardianship papers. People with Mental Illness Mental illness is generally a lifelong condition with intermittent presentation of symptoms. Most people with mental illness can be successfully treated with medications, therapy, and psychological support services. People with mental illness can read, write, drive, think and lead productive, independent lives in their communities with varying amounts of support and/or assistance. People with mental illness are legally competent, absent a finding by a court to the contrary. They are entitled to fully participate in their health plan, including giving informed consent.
Concerns that People with Disabilities have about Managed Care Most people don't like change For many health care consumers who have changed to managed care, their initial reaction was fear of the new controls on how they would get their health care. Individuals with disabilities have these same concerns, as well as some additional concerns. Because many individuals with disabilities need special health care services, they feel particularly vulnerable to the controls and structure of a managed care environment. For most consumers with disabilities, their doctor or psychiatrist is their principal contact with the managed care organization. As a result, you can ease many of their fears and concerns by talking with them about their needs and expectations in a managed care system. Changing to managed care is made easier for individuals with disabilities if providers and health care plans recognize and address concerns that have been openly expressed. Individuals with disabilities who enter managed care organizations are often concerned about: Choosing new doctors/losing their current doctor or psychiatrist (for people with behavioral health needs). Being cut off from their specialist. Seeing new providers who may not be familiar with their needs or disability. Not knowing where to go for help or who to talk with in a managed care system about problems. Facing limitations on necessary therapies and other benefits. Not receiving authorization for services or equipment (or repair of equipment) that they rely on for independence and maintenance of functioning. Determining whether the managed care organization (HMO, PPO) will have the appropriate structures, flexibility, and/or benefits to meet "non-typical" needs. Determining whether the managed care system will treat them fairly and how their problems can be resolved, informally and formally. Being afraid that they will be identified and treated as a diagnosis rather than a person. Losing independence of functioning or one's current level of health. Not being listened to or valued as experts about their disability and their needs.
Successful partnership with consumers with disabilities requires sensitivity to the issues of inclusion and discrimination, along with the recognition of the vast diversity of persons with disabilities and appreciation of their abilities. Many citizens have held outdated beliefs about persons with disabilities that influence their behaviors. By examining these beliefs, a learning process begins which can mean positive changes for everyone. Fiction: People with disabilities are inspirational, brave and courageous for living successfully with their disability. Fact: People with disabilities are simply carrying out normal activities of living when they drive to work, go shopping, pay their bills or compete in athletic events. Access to quality health care and long term care services and necessary equipment allows them to do these activities more easily.
Fiction: Having a disability is the same as being sick. Fact: Disability is not the same as being sick. Individuals with disabilities have varying degrees and types of need. Mistaking a disability for an illness means failing to respond to the individual's particular needs.
Fiction: Health care providers should make all the decisions for a person with a disability. Fact: People with disabilities want to be involved in their own care and have the right to make health care decisions for themselves. Sometimes people with disabilities need assistance from family members and others to make decisions. Involving a person with a disability in discussions about health services is central to creating a working partnership between the provider and enrollee. Without such a partnership, the quality and outcomes of health care services are limited.
Fiction: A person diagnosed with a major mental illness will always need hospitalization. Fact: The diagnosis of a major mental illness is not a life sentence to in-patient hospitalization. With appropriate medical services and supports including medication, regular medication monitoring, psycho-social and personal assistance services, many persons with mental illness can live stable, productive lives and can successfully manage the episodic nature of mental illness.
Fiction: People with disabilities always need expensive and high-tech assistive devices. Fact: Simple, inexpensive devices are often the most important in helping a person with a disability achieve a level of independence and enjoy good health. Assistive devices can be as affordable as low-cost eating utensils. In fact, assistive devices and assistive technology can be an effective form of preventive care, by reducing the need for personal care services, and preventing the need for admission to long term care facilities.
Fiction: A disability represents something that is wrong with a person. Fact: Disability is a natural part of the human experience. We are made stronger by our diversity when we provide all individuals with the right to live independently, enjoy self-determination, inclusion and integration into society.
Fiction: People with disabilities have a poor quality of life. Fact: This is one of the most common and damaging stereotypes, which discourages social interactions and the development of true relationships. People with disabilities get the flu and have allergies, they break arms and legs, and need routine gynecological exams. An individual with a disability needs to exercise, play and relax, and understand nutrition. They have the same needs and strive for a high degree of quality of life as other individuals.
"The difference between the right word and the almost right word is the difference between lightning and the lightning bug." Mark Twain Words matter. They reflect and influence our attitude. Standard words and phrases not only indicate how we feel and think, but also perpetuate belief systems. It is important to recognize that how you talk to and about a consumer with a disability affects whether he or she feels respected as a person. People with disabilities are people first. Disability
is a part of the person, it does not define the person. Our language
should reflect that. "People first" language literally puts the
person before the disability. People first language is an objective
way of acknowledging, communicating and reporting about disabilities.
Using "people first language" is more respectful, helps to halt
damaging stereotypes, and creates a climate where a person with
a disability can participate in his or her health care.
Disability is not unnatural. We will all experience disability at some point in our lives, through difficulties such as depression, trauma or as we age. Yet for people with permanent and on-going disabilities, impairment is a significant factor in their lives. While people with disabilities are not defined by their disability, it does play a role in shaping their lifestyles and needs. People with disabilities need assistance in doing certain tasks that other persons not having disabilities usually do with no assistance, like getting out of or in bed, stepping into the shower, sitting on the toilet, reading a book, shopping for groceries, deciding how to spend money, or traveling to work. However, most people with disabilities are limited in just a narrow range of activity, not their wider scope of social, vocational and cognitive behavior. People with disabilities can -- and do -- participate in all aspects of life, including work, play, romance and parenting. Unfortunately, most people fear or avoid what they don't understand. For many years, society shunned people with disabilities and worked actively to exclude people with disabilities from the mainstream of community life. Not only was such action harmful and isolating to people with disabilities themselves, but society lost one of its strongest ties to a diverse and inclusive community. Public perception is changing. Health care providers and public policymakers are beginning to understand that not only do people with disabilities want to remain in their homes and communities, but that home and community-based services offers all of us an opportunity to be strengthened by our diversity. The trend to enable people with disabilities to guide their own care, to remain independent and integral to their family and community has both tangible and intangible benefits. In home and community-based services are more economical. A less tangible, but perhaps more important fact is that inclusion of individuals with disabilities into all aspects of our society -- work, school, recreation and government -- offers us the opportunity to benefit from our diversity, share our experiences and be collectively strengthened by embracing our differences and celebrating our similarities. As a health services provider, you have the opportunity and the challenge to continue what has been a positive shift in public perception and practice. What can you do? 1) Recognize that your enrollees with disabilities are people who can and want to remain in their homes and contribute to their communities. 2) Choose treatment/services options that allow individuals with disabilities to exercise their choice and maintain their connection with the essential supports that exist in family, friends and work. By helping to instill a shift in the perception and practice of the health care community in regard to people with disabilities, you give greater meaning to the lives of your enrollees and greater resources to our communities. Guiding Principles for Disability Services People with disabilities possess the dignity and worth innate to every human being. Individuals with disabilities like all other people, have unique abilities, preferences, needs, desires, goals, and dreams. People with disabilities have the right to full access and inclusion in all aspects of community life. Children with disabilities have a right to grow up in a family. Individuals with disabilities have the right to act on their own behalf, to direct their own future, to represent their own interests, and to make decisions and take risks based on their own goals and values. People with disabilities have the right to accurate and timely information, presented in a manner they can use, in order to have options and make informed choices. Individuals with disabilities and their families have the right to full participation in the making of policies that affect their lives. People with disabilities and their families have the right to accessible services and supports customized to their needs, flexible to changing circumstances, and provided in their home community. People with disabilities are entitled to the same civil rights protections as any American citizen. People with disabilities have the right to freedom from abuse and neglect.
What You Should Know About the Americans with Disabilities Act What is the Americans with Disabilities Act? The Americans with Disabilities Act (ADA) of 1990 is the first comprehensive civil rights law for people with disabilities. The Act is the legal outcome of a strong movement that challenged previously held beliefs and practices about people with disabilities. The goal of the ADA is to eliminate discrimination by ensuring equal opportunity in employment, state and local government services and programs. In addition, ADA ensures equal access to services such as health care and education, and to places of public accommodation, public and private transportation, and telecommunications. How Does ADA Affect a Medical Practice? Compliance with the ADA is not only the law, but it is also a tool to attract new patients and to retain patients already in a practice. Health care providers are required to individually evaluate the needs of each enrollee with a disability and determine what accommodations are necessary to ensure that the person with a disability receives quality services that are comparable to services received by enrollees without disabilities. A medical practice that is in compliance with ADA provides equal access to physical admittance by using ramps, wheelchair accessible elevators and accessible restrooms. In addition, complying with ADA also involves addressing how services are provided. Some examples of how providers ensure access are:
What Organizations Provide Information and Resources on ADA? ADA Hotline at the Justice Department in Washington, D.C. provides information and materials on ADA and assists in remedying complaints on businesses and other public places that do not comply with ADA. 1-800-514-0301 1-800-514-0383 (TDD) Additional ADA information available on this Web site. Disability and Business Technical Assistance Centers on the ADA provide information, materials, and technical assistance to businesses and individuals on compliance with ADA physical and programmatic accessibility requirements. 1-800-949-4232 |
The complete ILRU Web site was developed with support from grants from the Department of Education. However, its contents and the opinions expressed do not necessarily represent the policy of the Department of Education, and no endorsement by the Department should be assumed. ILRU is a program of TIRR (The Institute for Rehabilitation and Research), a nationally recognized medical rehabilitation facility for persons with disabilities.
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