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Access to Health and Long-Term Services for People with Disabilities






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Who are People with Disabilities?. Disabilities can be classified as either physical disabilities or mental disabilities. Many individuals have more than one type of disability. Mental Disability: an impairment in the ability to think or learn, or that affects a person\'s behavior or perception.
Access to Health and Long-Term Services for People with Disa...

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1. Access to Health and Long-Term Services for People with Disabilities Prepared by Jeffrey S. Crowley Health Policy Institute, Georgetown University April 2006 Hello, my name is Jeffrey Crowley. I am a Senior Research Scholar at the Georgetown University Health Policy Institute. This is a tutorial on access to health and long-term services for people with disabilities. Health services refer to medically-oriented services, such as physician care and hospital services. Long-term services assist individuals in performing activities of every day life, such as bathing and dressing, toileting, eating, managing a home, or managing finances. For people with disabilities, access to both of these types of services is critical. While some individuals require this type of assistance only on a temporary basis, many individuals with disabilities need this type of assistance on an ongoing, long-term basis.Hello, my name is Jeffrey Crowley. I am a Senior Research Scholar at the Georgetown University Health Policy Institute. This is a tutorial on access to health and long-term services for people with disabilities. Health services refer to medically-oriented services, such as physician care and hospital services. Long-term services assist individuals in performing activities of every day life, such as bathing and dressing, toileting, eating, managing a home, or managing finances. For people with disabilities, access to both of these types of services is critical. While some individuals require this type of assistance only on a temporary basis, many individuals with disabilities need this type of assistance on an ongoing, long-term basis.

2. Who are People with Disabilities? Disabilities can be classified as either physical disabilities or mental disabilities. Many individuals have more than one type of disability. Mental Disability: an impairment in the ability to think or learn, or that affects a person?s behavior or perception. Examples include mental retardation, attention deficit hyperactivity disorder, and various forms of mental illness. Physical Disability: an impairment that affects the body?s ability to function normally. Examples include conditions ranging from paralysis to multiple sclerosis, as well as conditions for which symptoms may not be evident, such as immune disorders like lupus or HIV/AIDS. The term disability refers to a whole spectrum of conditions that impair individuals in leading their lives. These are commonly classified as mental disabilities or physical disabilities. A mental disability is a category of impairments that affects a person?s behavior or perception. This can include mental retardation and other cognitive disabilities, and the spectrum of mental health conditions, including depression, bipolar disorder, and schizophrenia. Physical disabilities impair the body?s ability to function normally. This includes everything from spinal cord injuries to neurological conditions such as multiple sclerosis, and immune system disorders such as Lupus or HIV/AIDS.The term disability refers to a whole spectrum of conditions that impair individuals in leading their lives. These are commonly classified as mental disabilities or physical disabilities. A mental disability is a category of impairments that affects a person?s behavior or perception. This can include mental retardation and other cognitive disabilities, and the spectrum of mental health conditions, including depression, bipolar disorder, and schizophrenia. Physical disabilities impair the body?s ability to function normally. This includes everything from spinal cord injuries to neurological conditions such as multiple sclerosis, and immune system disorders such as Lupus or HIV/AIDS.

3. Prevalence of Disability in the United States There is an unfortunate history of discrimination and marginalization of people with disabilities. One way to support the full participation of people with disabilities into society is to avoid language that is hurtful or that marginalizes or stigmatizes people with disabilities. This can be done by trying to use ?People first? language. So, instead of referring to the handicapped, the crippled, or even the disabled, it is preferable to refer to ?people with disabilities?. The broadest estimate is that at least 50 million Americans, or nearly one in five has a disability. A subset of this broad group, about 11% of the under-65 population, or more than 25 million people?has a specific chronic disability that has lasted or is expected to last for a year or more. Although the likelihood of disability increases with age, nearly 70% of people with severe disabilities are children or working age adults Insert 4 seconds pause. (~2:08)There is an unfortunate history of discrimination and marginalization of people with disabilities. One way to support the full participation of people with disabilities into society is to avoid language that is hurtful or that marginalizes or stigmatizes people with disabilities. This can be done by trying to use ?People first? language. So, instead of referring to the handicapped, the crippled, or even the disabled, it is preferable to refer to ?people with disabilities?. The broadest estimate is that at least 50 million Americans, or nearly one in five has a disability. A subset of this broad group, about 11% of the under-65 population, or more than 25 million people?has a specific chronic disability that has lasted or is expected to last for a year or more. Although the likelihood of disability increases with age, nearly 70% of people with severe disabilities are children or working age adults Insert 4 seconds pause. (~2:08)

4. Characteristics of Working Age People with Disabilities Many factors play a role in the ability of individuals to access health and long-term services. People with disabilities are less than half as likely as people without disabilities to be employed, they are less educated, with people without disabilities more than two and one-half times more likely to have earned a bachelor?s degree, they are 15% less likely than people without disabilities to have an income above the poverty level. Insert 4 seconds pause. (~2:29) Many factors play a role in the ability of individuals to access health and long-term services. People with disabilities are less than half as likely as people without disabilities to be employed, they are less educated, with people without disabilities more than two and one-half times more likely to have earned a bachelor?s degree, they are 15% less likely than people without disabilities to have an income above the poverty level. Insert 4 seconds pause. (~2:29)

5. Access Problems Among People with Chronic Disabilities, 2003 Despite their extensive needs for health services, many people with disabilities encounter barriers in accessing and obtaining services. Some of these barriers are financial, such as delaying care or reducing medication doses because of the costs. Other barriers (stumbled on ?barriers? ? can you edit out the stumbling? ~2:42) are more systemic, such as problems finding a provider.Despite their extensive needs for health services, many people with disabilities encounter barriers in accessing and obtaining services. Some of these barriers are financial, such as delaying care or reducing medication doses because of the costs. Other barriers (stumbled on ?barriers? ? can you edit out the stumbling? ~2:42) are more systemic, such as problems finding a provider.

6. Health Insurance Coverage One key factor that determines whether individuals can access the services they need is whether or not they have health coverage through either public or private sources.One key factor that determines whether individuals can access the services they need is whether or not they have health coverage through either public or private sources.

7. Health Insurance Coverage of the Nonelderly with Chronic Disabilities The lack of comprehensive data limits our ability to give a full picture of the health insurance status of people with disabilities. But, an analysis of the health insurance status of people with chronic disabilities?those lasting for at least one year?showed that slightly more than half have private insurance coverage. Twenty percent rely on Medicaid, a small share receive Medicare only, 6% receive both Medicare and Medicaid. Still, as many as 15% are uninsured. I?ll describe each of these programs in more depth in the next several slides. (Delete the words in green above. That sentence should read, ??a small share receive Medicare and Medicaid.) Also, insert 4 seconds pause at the end of this slide. (~3:28)The lack of comprehensive data limits our ability to give a full picture of the health insurance status of people with disabilities. But, an analysis of the health insurance status of people with chronic disabilities?those lasting for at least one year?showed that slightly more than half have private insurance coverage. Twenty percent rely on Medicaid, a small share receive Medicare only, 6% receive both Medicare and Medicaid. Still, as many as 15% are uninsured. I?ll describe each of these programs in more depth in the next several slides. (Delete the words in green above. That sentence should read, ??a small share receive Medicare and Medicaid.) Also, insert 4 seconds pause at the end of this slide. (~3:28)

8. Is Private Coverage Enough? Slightly more than half of all non-elderly persons with severe disabilities are covered by private health insurance High rates on unemployment among people with disabilities limits their access to employer-sponsored insurance; Individual market coverage is often inadequate, unavailable, or unaffordable to people with disabilities Private coverage is structured for healthy, working populations and rarely provides adequate coverage for people with disabilities. Slightly more than half of people with a chronic disability have private coverage, compared to roughly two-thirds of the general population. There are many factors that contribute to this lower rate of employer-sponsored coverage among people with disabilities, including the high rate of unemployment of people with disabilities. Individual market private coverage is also often inadequate or unaffordable, because premiums can be very costly and the benefits package offered in individual policies often have many exclusions for services of importance to people with disabilities. Assuming individuals can get and afford private insurance coverage, however, a major challenge is that private coverage was built for healthy, working populations and not for people with extensive health and long-term needs. Annual or lifetime benefit limits can restrict access to needed services. Furthermore, private coverage typically does not cover certain services needed by people with disabilities, such as long-term services and supports, rehabilitation, and personal assistance services. Insert 4 seconds pause. (~4:19) Slightly more than half of people with a chronic disability have private coverage, compared to roughly two-thirds of the general population. There are many factors that contribute to this lower rate of employer-sponsored coverage among people with disabilities, including the high rate of unemployment of people with disabilities. Individual market private coverage is also often inadequate or unaffordable, because premiums can be very costly and the benefits package offered in individual policies often have many exclusions for services of importance to people with disabilities. Assuming individuals can get and afford private insurance coverage, however, a major challenge is that private coverage was built for healthy, working populations and not for people with extensive health and long-term needs. Annual or lifetime benefit limits can restrict access to needed services. Furthermore, private coverage typically does not cover certain services needed by people with disabilities, such as long-term services and supports, rehabilitation, and personal assistance services. Insert 4 seconds pause. (~4:19)

9. Income and Health Programs for People with Disabilities Complex array of public programs support people with disabilities ? Can be difficult to navigate Social Security Disability Insurance (SSDI) provides income support for workers who develop disabilities Provides a pathway to Medicare eligibility Supplemental Security Income (SSI) ensures income of 74% of the poverty level Provides a pathway to Medicaid eligibility Low-income people can receive both SSDI and SSI; and also both Medicare and Medicaid Persons who receive both Medicare and Medicaid are called dual eligibles Now I?m going to talk about the public programs that are available to assist people with disabilities, both financially and in accessing health care. Social Security Disability Income or SSDI provides income support to workers who develop disabilities. Payments are based on past earnings. Receiving SSDI also provides an eligibility pathway for receiving Medicare. Supplementary Security Income or SSI ensures that low-income people with disabilities have income of at least 74% of the poverty level. In 2006, the monthly SSI payment is $603 per month. Receiving SSI also provides an eligibility pathway for Medicaid. Low wage workers may receive SSDI payments below 74% of poverty, and in such cases, SSI supplements the SSDI payment. Further, low-income people with disabilities can receive both Medicare and Medicaid. These individuals are called dual eligibles. Medicare and Medicaid are major financiers of health care services, and Medicaid is the major payer for long-term services, including nursing home stays and community-based services.Now I?m going to talk about the public programs that are available to assist people with disabilities, both financially and in accessing health care. Social Security Disability Income or SSDI provides income support to workers who develop disabilities. Payments are based on past earnings. Receiving SSDI also provides an eligibility pathway for receiving Medicare. Supplementary Security Income or SSI ensures that low-income people with disabilities have income of at least 74% of the poverty level. In 2006, the monthly SSI payment is $603 per month. Receiving SSI also provides an eligibility pathway for Medicaid. Low wage workers may receive SSDI payments below 74% of poverty, and in such cases, SSI supplements the SSDI payment. Further, low-income people with disabilities can receive both Medicare and Medicaid. These individuals are called dual eligibles. Medicare and Medicaid are major financiers of health care services, and Medicaid is the major payer for long-term services, including nursing home stays and community-based services.

10. Determination of Disability Status is a Critical Starting Point First step to receiving public benefits is for the Social Security Administration (SSA) to determine that an individual has a disability Based on a strict standard indicating adults are unable to work as a result of their disability Many are initially rejected due to inadequate documentation of disability Once SSA determines an individual has a disability, they can apply for public disability programs People with progressively disabling conditions, such as HIV/AIDS, Parkinson?s Disease, and multiple sclerosis may not meet SSA disability standard until advanced disease state There is a relatively stringent definition of disability that is used by the Social Security Administration (SSA) when evaluating requests for income support payments under SSDI and SSI and their related programs of Medicare and Medicaid. For an adult to be considered to have a disability, SSA must determine that they are unable to engage in any substantial gainful activity because of a physical or mental impairment that is expected to result in death or to continue for at least 12 months. In 2006, a person is considered to be engaged in substantial gainful activity if they earn more than $860 per month, or in the case of persons who are blind, $1,450 per month. Because children do not work, there is a modified definition of disability for children. Because of the stringent criteria for a disability determination, many individuals are rejected on their first application because SSA does not believe there is an adequate record to demonstrate disability. For this reason, individuals and their services providers need to carefully document all manifestations of disability. There are some conditions which are progressively disabling. In many cases, early access to health care can prevent or slow the progression of disability, but individuals do not meet the SSA standard for disability until they have advanced disease. This is the case for people with HIV/AIDS who generally do not meet the SSA standard for disability until they have an AIDS diagnosis. The same catch-22 can also limit early access to services for persons with conditions such as Parkinson?s Disease and multiple sclerosis. Insert 4 seconds pause. (~6:54) There is a relatively stringent definition of disability that is used by the Social Security Administration (SSA) when evaluating requests for income support payments under SSDI and SSI and their related programs of Medicare and Medicaid. For an adult to be considered to have a disability, SSA must determine that they are unable to engage in any substantial gainful activity because of a physical or mental impairment that is expected to result in death or to continue for at least 12 months. In 2006, a person is considered to be engaged in substantial gainful activity if they earn more than $860 per month, or in the case of persons who are blind, $1,450 per month. Because children do not work, there is a modified definition of disability for children. Because of the stringent criteria for a disability determination, many individuals are rejected on their first application because SSA does not believe there is an adequate record to demonstrate disability. For this reason, individuals and their services providers need to carefully document all manifestations of disability. There are some conditions which are progressively disabling. In many cases, early access to health care can prevent or slow the progression of disability, but individuals do not meet the SSA standard for disability until they have advanced disease. This is the case for people with HIV/AIDS who generally do not meet the SSA standard for disability until they have an AIDS diagnosis. The same catch-22 can also limit early access to services for persons with conditions such as Parkinson?s Disease and multiple sclerosis. Insert 4 seconds pause. (~6:54)

11. Medicare?s Role for People with Disabilities Medicare is the federal health coverage program for seniors and workers and their dependents who develop disabilities. While most of the Medicare population is 65 and older, it also covers several million younger people who have severe disabilities. Insert 3 seconds pause. (~7:07)Medicare is the federal health coverage program for seniors and workers and their dependents who develop disabilities. While most of the Medicare population is 65 and older, it also covers several million younger people who have severe disabilities. Insert 3 seconds pause. (~7:07)

12. Qualifying for Medicare Individuals under age 65 can qualify for Medicare on the basis of disability if they have a sufficient work history and after a waiting period 1. SSA determines that an individual has a disability; To ensure that disability is permanent or long-lasting, individuals must then wait 5 months before they start receiving SSDI; Starting when they first receive SSDI, individuals must wait an additional 24 months to start receiving Medicare Individuals with disabilities since childhood can receive Medicare based on the work history of a parent. These individuals are called disabled adult children (DACs), and are subject to the 24 month waiting period when they turn 18 (or develop a disability before age 22) Persons are eligible for Medicare when they turn 65 if they have worked and paid into the Social Security system--or if their spouse has paid into the system. Workers who become severely disabled before age 65 and can no longer work are also eligible for Medicare. To qualify for Medicare on the basis of disability, an individual generally must meet several criteria. Once a disability determination is made, individuals must wait another 5 months before receiving SSDI assistance as proof that the disability is long-term. With the exception of persons with kidney failure or Lou Gehrig?s disease, individuals must then wait an additional 24 months from when they first start receiving SSDI until they can receive Medicare. This waiting period means that many people with disabilities do not have health coverage for over 2 years, when access to health services may be critical and even prevent further disability. Individuals who have been disabled since childhood can receive Medicare based on the work history of a parent. These persons are called disabled adult children and are subject to the 24 month waiting period when they turn 18, or when they become disabled before age 22. This process is clearly complicated, requires extensive documentation, and results in a long waiting period before obtaining Medicare benefits. Insert 2 more seconds to the pause. (~8:20)Persons are eligible for Medicare when they turn 65 if they have worked and paid into the Social Security system--or if their spouse has paid into the system. Workers who become severely disabled before age 65 and can no longer work are also eligible for Medicare. To qualify for Medicare on the basis of disability, an individual generally must meet several criteria. Once a disability determination is made, individuals must wait another 5 months before receiving SSDI assistance as proof that the disability is long-term. With the exception of persons with kidney failure or Lou Gehrig?s disease, individuals must then wait an additional 24 months from when they first start receiving SSDI until they can receive Medicare. This waiting period means that many people with disabilities do not have health coverage for over 2 years, when access to health services may be critical and even prevent further disability. Individuals who have been disabled since childhood can receive Medicare based on the work history of a parent. These persons are called disabled adult children and are subject to the 24 month waiting period when they turn 18, or when they become disabled before age 22. This process is clearly complicated, requires extensive documentation, and results in a long waiting period before obtaining Medicare benefits. Insert 2 more seconds to the pause. (~8:20)

13. Key Medicare Benefits Medicare benefits include: Inpatient hospital care Physician visits Durable medical equipment/prosthetics Prescription drugs Facilitates access to specialty care Medicare covers many essential services, such as inpatient hospital care, doctor visits, durable medical equipment and prosthetics, and most recently, prescription drugs. Access to specialty care is often particularly important?and there may be only one or two providers in a given community with the appropriate expertise and experience to treat an individual?s specific disability. Having Medicare coverage can often be helpful in ensuring access to the right specialist. Insert 4 seconds pause. (~8:47) Medicare covers many essential services, such as inpatient hospital care, doctor visits, durable medical equipment and prosthetics, and most recently, prescription drugs. Access to specialty care is often particularly important?and there may be only one or two providers in a given community with the appropriate expertise and experience to treat an individual?s specific disability. Having Medicare coverage can often be helpful in ensuring access to the right specialist. Insert 4 seconds pause. (~8:47)

14. Limitations of Medicare Gaps in coverage include: Long-term services and supports Dental care and dentures Hearing aids Routine eye care and eyeglasses Routine foot care Limited mental health services Homebound Rule Limits Medicare home health services to persons who are cannot leave home Exception for to leave home infrequently or for short duration, to receive health care, attend adult day services programs or for religious services, policy is routinely applied more restrictively than law requires Nonetheless, the Medicare benefits package is not sufficient to meet the needs of many people with disabilities. Until this year, the absence of prescription drug coverage was one of the most evident gaps in Medicare coverage. Even with drug coverage, however, Medicare does not cover the long-term services and supports needed by many people with disabilities to maintain their health and retain their independence. Additionally, Medicare either does not cover?or has benefits limits?for other critical services needed by some people with disabilities including dental and vision care, hearing aids, podiatric services, and mental health services. For example, Medicare limits coverage for home health services, such as physical and occupational therapy, to persons who have cannot leave their home on a routine basis. This poses another catch-22 for many people with disabilities who are not sufficiently ill to be rendered homebound, but who would benefit greatly from home health services. Insert 4 seconds pause. (~9:38) Nonetheless, the Medicare benefits package is not sufficient to meet the needs of many people with disabilities. Until this year, the absence of prescription drug coverage was one of the most evident gaps in Medicare coverage. Even with drug coverage, however, Medicare does not cover the long-term services and supports needed by many people with disabilities to maintain their health and retain their independence. Additionally, Medicare either does not cover?or has benefits limits?for other critical services needed by some people with disabilities including dental and vision care, hearing aids, podiatric services, and mental health services. For example, Medicare limits coverage for home health services, such as physical and occupational therapy, to persons who have cannot leave their home on a routine basis. This poses another catch-22 for many people with disabilities who are not sufficiently ill to be rendered homebound, but who would benefit greatly from home health services. Insert 4 seconds pause. (~9:38)

15. Medicaid?s Role for People with Disabilities Now, I would like to turn to Medicaid?s role for low-income people with disabilities. Delete the mess-up (?Now, I would like to turn to Medicaid?s role, uh excuse me? ~9:40) Now, I would like to turn to Medicaid?s role for low-income people with disabilities. Delete the mess-up (?Now, I would like to turn to Medicaid?s role, uh excuse me? ~9:40)

16. Qualifying for Medicaid on the Basis of Disability Medicaid is the health coverage program for low-income people who fall into certain eligibility categories (i.e. children, parents, seniors, and people with disabilities) and who meet income, resource (assets), citizenship, and state residency requirements People with disabilities must meet the same Social Security standard for disability as Medicare 78% of people with disabilities qualify as recipients of SSI States can cover people with disabilities up to the poverty level and use other options to extend coverage; medically needy coverage in which individuals start out with too much income, but ?spend down? by incurring substantial medical expenses is an important pathway to Medicaid coverage in some states Medicaid provides a safety net for certain categories of low-income Americans, including children and their parents, seniors and people with disabilities. Individuals in these categories must also have low incomes, limited financial resources, and meet other requirements. For individuals to qualify on the basis of disability, they must meet the same standard for disability as for Medicare. The vast majority?78%?are quite poor and qualify on the basis of receiving SSI. States must follow federal rules, but they have broad flexibility in running their own programs. They have multiple options for extending Medicaid coverage to people with disabilities in addition to SSI recipients. A particularly important way that people qualify for Medicaid is through medically needy coverage offered in more than two-thirds of the states where individuals that start out with too much income, but qualify for Medicaid after their income minus medical expenses is below a state-set medically needy income limit.Medicaid provides a safety net for certain categories of low-income Americans, including children and their parents, seniors and people with disabilities. Individuals in these categories must also have low incomes, limited financial resources, and meet other requirements. For individuals to qualify on the basis of disability, they must meet the same standard for disability as for Medicare. The vast majority?78%?are quite poor and qualify on the basis of receiving SSI. States must follow federal rules, but they have broad flexibility in running their own programs. They have multiple options for extending Medicaid coverage to people with disabilities in addition to SSI recipients. A particularly important way that people qualify for Medicaid is through medically needy coverage offered in more than two-thirds of the states where individuals that start out with too much income, but qualify for Medicaid after their income minus medical expenses is below a state-set medically needy income limit.

17. Key Medicaid Benefits ?Mandatory? Services Physician?s services Laboratory and x-ray services Inpatient hospital services Outpatient services Early and periodic screening, diagnostic, and treatment (EPSDT) services for individuals under 21 Nursing home care Home health services (for persons entitled to nursing home care) ?Optional? Services Prescription drugs Dental services, dentures Physical therapy and related services Prosthetic devices, eyeglasses Services in Intermediate Care Facilities for persons with Mental Retardation (ICFs-MR) Personal care services Rehabilitation services Private duty nursing As with the Medicaid eligibility rules that permits states to go beyond federal minimum standards, the federal Medicaid law establishes certain ?mandatory? services that states must cover, as well as other ?optional? services that states can choose to cover. The Medicaid benefits package can meet the many and diverse needs of people with all types of disabilities. Indeed, the many so-called optional services are really disability-related services that are not commonly needed by people who do not have disabilities. Critical services include prescription drug coverage, therapy services, and community-based long-term services, such as the personal care and rehabilitation services options or services provider under home- and community-based services waiver programs. Insert 4 seconds pause. (~11:21) As with the Medicaid eligibility rules that permits states to go beyond federal minimum standards, the federal Medicaid law establishes certain ?mandatory? services that states must cover, as well as other ?optional? services that states can choose to cover. The Medicaid benefits package can meet the many and diverse needs of people with all types of disabilities. Indeed, the many so-called optional services are really disability-related services that are not commonly needed by people who do not have disabilities. Critical services include prescription drug coverage, therapy services, and community-based long-term services, such as the personal care and rehabilitation services options or services provider under home- and community-based services waiver programs. Insert 4 seconds pause. (~11:21)

18. Medicaid Enrollees and Expenditures by Enrollment Group, 2003 While low-income children and families represent the majority of Medicaid beneficiaries, people with disabilities and seniors (who are often people with disabilities over age 65) are responsible for most of the program?s spending. Seniors and people with disabilities comprise only 25% of enrollees, yet they account for 69% of program spending. Insert 3 seconds pause. (~11:41) While low-income children and families represent the majority of Medicaid beneficiaries, people with disabilities and seniors (who are often people with disabilities over age 65) are responsible for most of the program?s spending. Seniors and people with disabilities comprise only 25% of enrollees, yet they account for 69% of program spending. Insert 3 seconds pause. (~11:41)

19. Medicaid Expenditures for Individuals with Disabilities, by Type of Service, 1998 This is in part because the needs of seniors and people with disabilities are often quite expensive?and they rely on Medicaid both for extensive acute medical care services, as well as extensive community-based and institutional long-term services and supports. As you can see here, acute care services, such as inpatient hospital stays, outpatient care, and prescription drugs accounted for just over half of all Medicaid spending on people with disabilities. Long-term services, such as nursing home stays and home health services and personal assistance comprised just under half of Medicaid spending for this population. Insert 3 seconds pause. (~12:15) This is in part because the needs of seniors and people with disabilities are often quite expensive?and they rely on Medicaid both for extensive acute medical care services, as well as extensive community-based and institutional long-term services and supports. As you can see here, acute care services, such as inpatient hospital stays, outpatient care, and prescription drugs accounted for just over half of all Medicaid spending on people with disabilities. Long-term services, such as nursing home stays and home health services and personal assistance comprised just under half of Medicaid spending for this population. Insert 3 seconds pause. (~12:15)

20. Access to Community-Based Services Now, I would like to turn to a major policy issue facing Medicaid in its role in supporting people with disabilities. Many people with disabilities would prefer to live in community settings, that is either at home with their families or independently. However, one major problem is Medicaid?s institutional bias. That is, under Medicaid, coverage for nursing home stays is a MANDATORY benefit, but corresponding community services are an OPTIONAL benefit for states. As a result, states have limited the extent to which they will pay for community services, and community services are frequently in short supply. Now, I would like to turn to a major policy issue facing Medicaid in its role in supporting people with disabilities. Many people with disabilities would prefer to live in community settings, that is either at home with their families or independently. However, one major problem is Medicaid?s institutional bias. That is, under Medicaid, coverage for nursing home stays is a MANDATORY benefit, but corresponding community services are an OPTIONAL benefit for states. As a result, states have limited the extent to which they will pay for community services, and community services are frequently in short supply.

21. Medicaid and Community-Based Services Community-based services allow people with disabilities who do not require nursing home care to live independently or with families Institutional bias in Medicaid Nursing home stays are mandatory benefit Community-based services is optional benefit

22. The Americans with Disabilities Act (ADA) and Health Care I. Employment Requires employers with 15 or more employees to provide qualified individuals with disabilities equal opportunity to benefit from full range of employment-related opportunities available to others. II. Public Services Requires state and local governments to give people with disabilities equal opportunity to benefit from programs, services, and activities. III. Public Accommodations and Services Operated by Private Entities Requires public accommodations to comply with nondiscrimination requirements that prohibit exclusion, segregation, and unequal treatment IV. Telecommunications Addresses telephone and TV access for people with hearing and speech disabilities; requires closed captioning of federally funded public service announcements. In recent years though, the Americans with Disabilities Act?the landmark civil rights law enacted in 1990?has played a major role in policies related to Medicaid coverage for community-based services. The ADA protects individuals with disabilities from discrimination on the basis of disability in employment, in accessing public services, in accessing public facilities, and in accessing telecommunications. Until recently, it was unclear how this law applied to public services provided under Medicaid. Insert 2 more seconds to the pause. (~13:17) In recent years though, the Americans with Disabilities Act?the landmark civil rights law enacted in 1990?has played a major role in policies related to Medicaid coverage for community-based services. The ADA protects individuals with disabilities from discrimination on the basis of disability in employment, in accessing public services, in accessing public facilities, and in accessing telecommunications. Until recently, it was unclear how this law applied to public services provided under Medicaid. Insert 2 more seconds to the pause. (~13:17)

23. The Interaction of the ADA and Medicaid Olmstead v. L.C. in 1999 involved two Medicaid beneficiaries with mental retardation, who challenged their institutional placement under the ADA. The Supreme Court ruled that: Unjustified institutional isolation of people with disabilities is a form of unlawful discrimination States required to provide community services for persons with disabilities otherwise entitled to institutional services when the state?s treatment professionals reasonably determine that community placement is appropriate; the person does not oppose such placement; and the placement can reasonably be accommodated Reasonable modifications standard does not require states to make ?fundamental alterations? in its services or programs. In 1999, the Supreme Court decided the case of Olmstead v. L.C. which applied the ADA?s protections in the context of programs under state Medicaid programs. In this case, two women with mental retardation, Lois Curtis and Elaine Wilson, challenged their placement in institutions as a violation of the ADA. (DROP the sentence in green.) The legal question was whether Title II of the ADA requires placement of persons with mental disabilities in community settings rather than institutions. The Court ruled that the unjustified institutional isolation of people with disabilities is unlawful discrimination, and that states must provide community services for people with disabilities otherwise entitled to nursing home and other institutional services when appropriate. This decision did not end the institutional bias and a state?s obligations to provide community services are limited by the resources available to the state. However, the decision in the Olmstead case provided an impetus for greater efforts to push states to expand access to community services. Nonetheless, the number of people on waiting lists has grown since the Olmstead decision and there are currently more than 200,000 people on Medicaid waiting lists. (DROP the sentence in green.) Insert 2 more seconds to the pause at the end of this slide. (~14:26) In 1999, the Supreme Court decided the case of Olmstead v. L.C. which applied the ADA?s protections in the context of programs under state Medicaid programs. In this case, two women with mental retardation, Lois Curtis and Elaine Wilson, challenged their placement in institutions as a violation of the ADA. (DROP the sentence in green.) The legal question was whether Title II of the ADA requires placement of persons with mental disabilities in community settings rather than institutions. The Court ruled that the unjustified institutional isolation of people with disabilities is unlawful discrimination, and that states must provide community services for people with disabilities otherwise entitled to nursing home and other institutional services when appropriate. This decision did not end the institutional bias and a state?s obligations to provide community services are limited by the resources available to the state. However, the decision in the Olmstead case provided an impetus for greater efforts to push states to expand access to community services. Nonetheless, the number of people on waiting lists has grown since the Olmstead decision and there are currently more than 200,000 people on Medicaid waiting lists. (DROP the sentence in green.) Insert 2 more seconds to the pause at the end of this slide. (~14:26)

24. Looking Ahead: Policy Issues on the Horizon Aging of the population and growth in population of people with disabilities Rising costs for health and long-term services Erosion of private health insurance coverage Federal and state revenue budget pressures Growing numbers of uninsured Americans Several current policy issues complicate efforts to enhance access to community-based services and strengthen the array of programs and services for people with disabilities. These include the aging of the population and the growth in the number of Medicaid beneficiaries with disabilities. Costs for health and long-term services are rising. We have seen an erosion of private health insurance coverage. There are continuing federal and state budget pressures, and the nation is challenged in financing health coverage for growing numbers of uninsured Americans. As public budget pressures intensify, the needs of and costs and benefits associated with providing health and long-term services to people with disabilities will remain central to the policy debate. I hope this tutorial has provided you with an overview of some of the key policy issues regarding access to health and long-term services for people with disabilities. To watch other Kaiser EDU tutorials, please visit www.kaiserEDU.org. Several current policy issues complicate efforts to enhance access to community-based services and strengthen the array of programs and services for people with disabilities. These include the aging of the population and the growth in the number of Medicaid beneficiaries with disabilities. Costs for health and long-term services are rising. We have seen an erosion of private health insurance coverage. There are continuing federal and state budget pressures, and the nation is challenged in financing health coverage for growing numbers of uninsured Americans. As public budget pressures intensify, the needs of and costs and benefits associated with providing health and long-term services to people with disabilities will remain central to the policy debate. I hope this tutorial has provided you with an overview of some of the key policy issues regarding access to health and long-term services for people with disabilities. To watch other Kaiser EDU tutorials, please visit www.kaiserEDU.org.


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