Federal law in America only requires that individual States in this nation cover nursing home care in relation to their Medicaid programs, much to the dismay of many people with disabilities.
There are no requirements that States provide people with disabilities who receive Medicaid and are eligible with home and community-based care services. The Community Choice Act requires that every Medicaid eligible person with disabilities, as well as older Americans, have a choice between receiving care in their homes or in an institution.
The overwhelming majority of people with disabilities would much rather stay in their own community and get the assistance they need with daily living at home. The opinion is prevalent among people with intellectual and developmental disabilities, physical disabilities, as well as older Americans. Having the option to choose to receive community-based supports and services is a critical one that allows people to live independently, participate actively in daily family life, have jobs, as well as participate in their community.
The Community Choice Act requires that people with disabilities who receive Medicaid and who have conditions that are serious enough to qualify for an, 'institutional level of care,' must also be given access to personal care services in their own community. These services must be provided even in States that do not offer these services at this time, or offer them to limited populations. The personal care services under the Community Choice Act include assistance with accomplishing activities of daily living, such as bathing, dressing, grooming and eating. They include assistance with activities like chores, shopping, finances, meal preparation, and health functions.
Studies related to the Community Choice Act and the provision of services to people with disabilities in their homes and communities demonstrate that the costs are much lower than those for similar services in an institutional setting. Providing these services in the person's home and community is less expensive than providing them in a nursing home, allowing people to receive the care they need, as well as slowing the growth in Medicaid spending. The bill provides for a five-year period of implementation, increasing the federal share of Medicaid during that period of time in recognition of the federal obligation during a transition away from institutional care. The bill also provides new funding in order to pay for expenses related to transitioning people with disabilities out of institutions including rent, deposits, and provision for basic household needs.
Addressing the needs of people with disabilities in relation to long-term care, which have gone unmet for an extended period of time in America, is critical. The Community Choice Act has the potential to genuinely reduce the numbers of people with disabilities living in institutions, reduce or delay nursing home admissions, allow people with disabilities to get the personal care services they need, while providing American Citizens with disabilities and older Americans with a choice concerning where they will receive the supports and services they require.
Almost half of all long-term care services and supports are financed through Medicaid. There is a long-standing, 'institutional bias,' within the Medicaid program. As a result, nearly sixty-percent of the funding through Medicaid for long-term services and supports is spent through institutional services. There are extensive waiting lists within States for community-based supports and services. Not all States maintain detailed waiting list information; hundreds of thousands of people with developmental disabilities are waiting for services. A number of these people with developmental disabilities are living with aging family members as well. Estimates indicate that over seven-hundred and eleven-thousand, four-hundred and seventy-eight adults with developmental and intellectual disabilities living with family caregivers who are over the age of sixty, waiting for community-based services.
"Former Senator Obama supported the Community Choice Act. As President, Mr. Obama has hedged on the Community Choice Act in relation to Health Care Reform, drawing protests from people in the disability community. When protesters showed up at the White House to object to President Obama's stance, he had them arrested, wheelchairs and all." - Thomas C. Weiss
The Consortium for Citizens with Disabilities (CCD) and Health Care Reform
The CCD feels that the goal of health care reform should be to make sure that every American, to include people with disabilities and those who experience chronic conditions, have access to health care that is comprehensive, affordable, and high quality. We should have health care that meets our individual needs and enables us to be healthy, functional, participate in our communities, and live as independently as possible. The CCD advocates for persons with disabilities and chronic conditions and their family members.
The CCD recognizes that people with disabilities and chronic illnesses many times have health care needs that require a greater amount, duration, and scope than other persons in the population. A number of people experience multiple conditions that contribute to variations of complex and differing severity where needs related to health and long-term services and supports are concerned.
The year 1998 found the President's Advisory Commission on Consumer Protection and Quality in the Health Care Industry publishing its final report; the report recommended that the President should develop a broad national consensus on improvement of the quality of the health care system in America. The report recommended that the President should make a unifying statement of purpose for the health care system and then work with Congress and the private sector to implement it. The Commission suggested a unifying statement:
"The purpose of the health care system must be to continuously reduce the impact and burden of illness, injury, and disability, and to improve the health and functioning of the people of the United States."
The statement is still highly-relevant today. Reform of America's health care system involves more than simply covering people for acute care services when they need it, or when they get sick or injured. Health care for people with disabilities and chronic conditions involves a broad range of services and supports and devices that include and follow things such as acute care medicine. These services are many times long-term and ongoing in nature, seeking to maximize the person's health status, the ability to function as fully as possible in society, independent living, employment, as well as their ability to pursue fulfilling and meaningful lives.
The CCD is very aware of the absolute enormity that health care reform presents to the nation of America. They are assessing this reform based on how well it addresses the needs of people with disabilities and chronic conditions. The CCD views disability as a form of, 'litmus test,' for how well health care reform addresses the needs of all American Citizens. If health care reform provides comprehensive and high-quality care to people with disabilities and chronic conditions - then it will serve the needs of all Americans.
The CCD is using six principles in order to guide it's assessment of health care reform from a disability perspective. These principles, directly from the CCD, are outlined below.
PRINCIPLES FOR HEALTH CARE REFORM FROM A DISABILITY PERSPECTIVE
Non-Discrimination: People with disabilities of all ages and their families must be able to fully participate in the nation's health care system.
Discrimination occurs when people with disabilities and chronic illnesses are subjected to preexisting condition exclusions, excessive costs through medical underwriting, arbitrary caps and benefit limits, or a denial of insurance coverage altogether. It also occurs when the private insurance system fails to adequately meet the needs of people with disabilities and chronic conditions, forcing them onto publicly financed health care programs. To avoid discriminating against people with disabilities, a reformed health care system must:
"Design the private insurance system to cover ALL Americans so that Medicaid and Medicare are not the only option for coverage of people with disabilities;
"provide access (i.e., guarantee issue) to private coverage without regard to health or disability status on par with access provided to those without disabilities;
"prohibit rating practices that "price out" of private coverage higher users of health care;
"strengthen the Medicaid program so that it provides accessible, high-quality health care services to people with disabilities enrolled in the program regardless of where they live;
"permit people on Medicare below age 65 the same access to Medigap policies as people on Medicare above age 65; and
"hold accountable federal and state government agencies involved in funding healthcare and managed care organizations/health plans to ensure that health care providers with whom they contract are physically and programmatically accessible.
Comprehensiveness: People with disabilities and their families must have access to benefits that provide a comprehensive array of health, rehabilitation, assistive device, and support services across all service categories and sites of service delivery.
In a reformed system, individuals with disabilities must have access to comprehensive health benefits that help them achieve and sustain optimum physical and mental function.
A comprehensive health care system promotes affordable access to:
"preventive services, including services to prevent the worsening of a disability or a condition that is secondary to a disability;
"habilitation services, rehabilitation therapies, and independent living services designed to restore or improve function, including the lessening of deterioration of function over time;
"condition/disease management services to better coordinate chronic and complex illnesses;
"durable medical equipment, orthotics, prosthetics, and other assistive technologies and related services that do not include inequitable limits and restrictions;
"mental health, counseling, and substance abuse services;
"accessible medical equipment such as examination tables and diagnostic equipment; and
"health and wellness initiatives for people with disabilities that will reduce health disparities;
Continuity: People with disabilities of all ages and their families must have access to health care that responds to their needs over their lifetimes, and provides continuity of care that helps treat and prevent chronic conditions.
Adults and children with disabilities often need long-term services and supports that enable them to live as independently as possible.
A health care system that supports continuity of care:
"includes mechanisms to assure timely and quality care between health care settings and provider systems, as well as a seamless continuum between health care services and long term services and supports for people with disabilities and chronic illnesses;
"emphasizes home and community based services and, by doing so, reduces the need for and cost of institution-based care;
"enables families to provide care for family members with disabilities of any age in the most appropriate setting;
"does not force impoverishment in order to have needs met for health coverage and long-term services and supports and
"includes a public insurance program for long term services and supports as a meaningful complement to Medicaid.
Appropriateness: People with disabilities and their families must be assured that comprehensive health, rehabilitation, and long term support services are provided on the basis of individual need, preference, and choice.
The issue of consumer choice and participation has particular importance for persons with disabilities and chronic conditions.
An appropriate health care system is one that ensures:
"services are patient-centered and consumer-directed to the maximum extent possible;
"informed consumer choice in relation to providers and services;
"an appropriate amount, duration and scope of services, devices and related benefits;
"access to trained, qualified, and appropriately credentialed health care personnel;
"the designation of physicians who understand disability and function to help plan and coordinate care with the rehabilitation team as an alternative to gatekeeper case managers with no experience with disability; and,
"that all patients are responsible for making good individual health care choices.
Equity: People with disabilities and their families must have equitable access to health coverage programs and not be burdened with disproportionate costs.
Health care reform must ensure that people have access to services based on health care need and not because of factors such as employment status or income level.
An equitable health system:
"provides access to services based on health needs and not on income or employment status;
"limits the burden of out-of-pocket expenses and cost sharing requirements for participants on a sliding scale based on income and ensures affordability in public and private programs;
"eliminates the 24-month Medicare waiting period so that SSDI beneficiaries have equal access to Medicare coverage as those who qualify for Medicare based on age;
"ensures access to a broad array of insurance options for people with disabilities below age 65, including access to COBRA coverage as a wrap-around benefit, Medigap policies, and individual private insurance coverage that is affordable;
"includes ALL Americans and does not use public programs such as Medicare and Medicaid as the preferred insurance mechanism for high users of care; and
"reimburses providers at levels that are adequate to ensure access to and quality of care.
Efficiency: People with disabilities and their families must have access to health care that is effective and high quality with a minimum of administrative waste.
CCD is concerned that the current fragmented health care system has failed to achieve effective cost controls or a rational allocation of health resources and contributes to substantial administrative waste. An efficient health care system is one that:
"reduces administrative complexity and minimizes administrative costs;
"allocates resources by investing in services that will eliminate or reduce the need to spend more later in a person's life, while maximizing the potential of the individual;
"stresses prevention and wellness;
"presumes that the optimal setting for providing care is in the person's home and community;
"actively manages and coordinates care for people with chronic conditions in order to improve quality and reduce unnecessary costs;
"ensures that Medicaid financing is sustainable over time with countercyclical mechanisms to provide more funding to states when the economy declines and enrollment increases;
"ensures the delivery of clinically effective services; and
"limits or eliminates fraud and abuse so precious resources can meet patients' needs.
The CCD will analyze health care reform based upon how well the President and this administration meets these principles, and how well health care reform serves people with disabilities and chronic conditions.
The disability community is integral to the national health care reform effort. People with disabilities and chronic conditions are highly vulnerable to any limitations of either public OR private health care systems as they are squeezed between a private system which is designed to charge in accordance to an assessment of risk, and a public system that subsidizes health care according to age, poverty status, family structure, or the ability to work.
The disability community is ready to participate actively in health care reform, but will President Obama allow us to participate? Will President Obama and this administration listen to our voices
There are more than sixty-nine National, American, Veteran's, and additional Disability Organizations who will be watching President Obama as he speaks about Health Care Reform. These same Disability Organizations will, just as every single person with a disability or chronic health condition, be listening for a mention of inclusion of the Community Choice Act in Health Care Reform. We - as People with Disabilities, People who experience Chronic Health Conditions, Family Members, and Friends, will be watching very, very closely to see that we are included in any kind of Health Care Reform in America
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Famous People with Disabilities - Well known people with disabilities and conditions who contributed to society.