THE HEALTH & DISABILITY ADVOCATES
NO-NONSENSE GUIDE TO
MEDICAID FOR ADULTS WITH DISABILITIES
M edicaid is an important government program that helps pay for the medical expenses of individuals and families with limited incomes, including certain adults with disabilities. Medicaid covers a broad range of medical and disability-related services and supports. Depending on what state you live in, Medicaid can cover doctors' fees, hospital care, prescriptions, dental work, mental health services, assistive technology, speech and occupational therapy, personal assistance services, and "durable" medical equipment such as wheelchairs.
Medicaid is not the same as Medicare [http://www.medicare.gov/], although many
people confuse the two because their names are so much alike. Although Medicare
and Medicaid are both a form of health insurance, the eligibility requirements
and the services covered are generally quite different. One example of the
differences: Medicare does not pay for prescriptions; under Medicaid,
prescriptions are currently covered in all the states. Adults with disabilities
can be eligible for both Medicaid and Medicare. Since many individuals need
both for comprehensive health care coverage, it's essential to
understand the differences between the two programs, and the services and
eligibility requirements for each.
The federal government and the states jointly fund Medicaid, and the states are responsible for carrying out the day-to-day operations. Working within federal guidelines, the states make choices and decisions about who can receive Medicaid and what services are covered. For example, almost all the states have chosen to provide Medicaid coverage to adults with disabilities who receive Supplemental Security Income; only about half of the states have chosen to provide Medicaid through a "buy-in" to adults with disabilities who start or return to work. Again, it all depends on the choices each state makes.
Individuals with disabilities, their families and advocates, providers and policy-makers, all make crucial decisions about Medicaid everyday. To make wise, informed decisions, people need (at a minimum) a basic understanding of who is eligible for Medicaid and what services the program covers. The No-Nonsense Guide to Medicaid for Adults with Disabilities gives readers those basics. It also describes some of the key areas in which states must make choices about the design and implementation of their Medicaid programs - and the ways those choices can affect people with disabilities, particularly those who want to start or return to work. We hope with this information, stakeholders will have the tools they need to examine the choices their states have made and, most importantly, to advocate for any needed changes.
PART I: MEDICAID BASICS
As described in the Introduction, both the state and federal governments have responsibilities for certain aspects of the Medicaid program. The states, however, have a lot more say about who receives Medicaid and what services eligible people can receive than you might think.
The Federal Government's Role
C ongress created Medicaid in 1965 as part of the Social Security Act. 1 The Centers for Medicare and Medicaid Services [http://www.cms.gov/], a part of the U.S. Department of Health and Human Services [http://www.dhhs.gov/], administers the Medicaid program and is responsible for implementing the Medicaid law.
CMS publishes the federal Medicaid rules in the Code of Federal Regulations
and a State Medicaid Manual, Program Transmittals, and Program Memoranda
covering instructions to, and guidelines for, the States [www.cms.gov/manuals]. States must follow
these federal laws and rules when designing and administering their Medicaid
programs. In return, the federal government pays part of the states' Medicaid
costs - an amount known as the Federal Medical Assistance Percentage (FMAP).
Each state's FMAP is determined by using a formula that compares the average
income level for the state's residents to the national average, which means that
wealthier States have a smaller share of their costs reimbursed.
State Medicaid Agencies
S tates run the day-to-day operations of the Medicaid program, and the structure and organization of state Medicaid agencies varies tremendously.3 In some states, Medicaid is a separate agency; in others it is a division of a larger agency, such as a department of human services, which oversees many programs. Medicaid can also go by different names. For example, California calls its program MediCal, Kansas calls it Medical Services, and Massachusetts calls it MassHealth. States also have their own Medicaid laws, rules, and state agency materials. All states must submit State Plans to CMS for approval describing their Medicaid program, including eligibility guidelines and covered services. [www.cms.hhs.gov/medicaid/stateplans/].
T here are certain medical services that states must cover for adults with disabilities who are eligible for Medicaid, and they are called mandatory services. In addition, states can pick and choose from a long list of optional services. Here we list the various options, but it's also important to find out the specific optional services your state has selected [click on your state at [www.cms.hhs.gov/medicaid/statemap.asp ]4.
Depending on the circumstances, some services and/or equipment actually fit under the mandatory or optional categories. For example, an augmentative communication device, defined as "any appliance or system designed to support, enhance, or augment the communication of individuals who are not independent oral communicators" can be covered as mandatory home health care services (as medical equipment) or under any one of these optional services categories: prosthetic devices; speech, hearing and language therapy; or rehabilitative services.
M edical services like doctors' visits, hospital care, and x-rays are mandatory for people with Medicaid, meaning the state must cover their costs. Here are the mandatory services (listed alphabetically) that states must provide to adults with disabilities who are eligible for Medicaid:
Early and Periodic Screening, Diagnosis and Treatment covers just what it sounds like - screening and diagnosis to determine physical and/or mental disabilities in people under age 21. Under the EPSDT rules, health care and treatment for any conditions and/or disabilities discovered during the screening process are also covered. Although many people think EPSDT is just for children, it also applies to young adults [www.cms.hhs.gov/medicaid/epsdt/default.asp].
Family planning services and supplies for women of "child-bearing age."
Home health care services for people over 21 who are eligible for skilled nursing services [www.cms.hhs.gov/medicaid/services/homehlth.asp]. 5
Home health includes:
a. Nursing services;
b. Home health aide services;
c. Medical supplies, equipment, and appliances; and
d. Physical therapy, occupational therapy, or speech pathology and audiology services.
Inpatient hospital services furnished under the direction of a physician or dentist, in an institution that primarily cares and treats people for conditions other than "mental disease."
Laboratory and x-ray services, meaning professional and technical lab and radiological services provided by physicians (or other licensed practitioners), or ordered by a physician and provided by a referral laboratory.
Nurse midwife services authorized under state law, whether or not they are performed in the area of management of the care of mothers and babies throughout the maternity cycle.
Nurse practitioner services, including both Certified Pediatric Nurse Practitioners and Certified Family Nurse Practitioners.
Outpatient hospital services, provided by or under the direction of a doctor or dentist, that are "preventive, diagnostic, therapeutic, rehabilitative, or palliative [meaning they relieve pain]."
Physician services provided in doctors' offices, homes, hospitals, skilled nursing facilities, or elsewhere. Also included are dentists' medical and surgical services.
Rural health clinic services (and related supplies) furnished by doctors, physician assistants, nurse practitioners, nurse midwives or other specialized nurse practitioners in certified rural health clinics.
Skilled nursing facility services (other than services in
an "institution for mental disease") for people age 21 or older, needed on a
daily basis and on an inpatient basis [www.cms.hhs.gov/medicaid/services/nursfac.asp].
S tates can also choose to cover additional services. There are over 30 optional services for adults from which the states can choose, including the following:
Case management services include the location, coordination, and monitoring of primary health care services [www.cms.hhs.gov/states/letters/bbapccm.asp].7
Chiropractic services, consisting of treatment "by means of manual manipulation of the spine..."
Clinic services that are "preventive, diagnostic, therapeutic, rehabilitative, or palliative," furnished by a facility that isn't part of a hospital but is organized and operated to provide medical care to outpatients.
Dental services, meaning diagnostic, preventive, or corrective procedures, including treatment of teeth and "structures of the oral cavity"; and disease, injury, or impairment that affect oral or general health.
Dentures, defined as artificial structures made by dentists (or under their direction) to replace full or partial sets of teeth.
Diagnostic services, which include any medical procedures or supplies recommended by physicians (or other licensed practitioners) needed to identify the existence, nature, or extent of illness, injury, or other health "deviation."
Emergency hospital services necessary to prevent death or "serious impairment."
Home and community-based services for individuals with disabilities and chronic medical conditions, including the following services:
a. Case management services;
b. Homemaker services;
c. Home health aide services;
d. Personal care services;
e. Adult day health services;
f. Habilitation services;
g. Respite care services;
h. Day treatment or other partial hospitalization services, psychosocial rehabilitation services and clinic services;
i. and Other services requested by the states and approved by CMS as being necessary to avoid institutionalization. 8
Hospice care, including a range of related services such as nursing care, medical social services, physicians' services, counseling services for terminally ill individuals and their families, and medical appliances and supplies.
Inpatient psychiatric services for individuals under age 22.
Intermediate care facility services for persons with mental retardation and developmental disabilities [www.cms.hhs.gov/medicaid/icfmr/default.asp].
Nursing facility services for individuals under age 22.
Occupational therapy, including any necessary supplies and equipment [www.cms.hhs.gov/medicaid/services/ptot.asp].
Optometrists' services and eyeglasses include lenses, frames, and other vision aids.
Personal care services that are part of treatment or service plans [www.cms.hhs.gov/medicaid/services/pcserv.asp].9
Physical therapy, including any necessary supplies and equipment [www.cms.hhs.gov/medicaid/services/ptot.asp].
Prescription drugs, prescribed for the "cure, mitigation, or prevention of disease" or for health maintenance. Note that all of the states have selected this as one of their optional services.
Preventive services provided to (1) prevent disease, disability, and other health conditions or their progression; (2) prolong life; and (3) promote physical and mental health and efficiency.
Private duty nurses for people who require more individual and continuous care than is available from a visiting nurse or routinely provided by nursing staff of a hospital or skilled nursing facility, and which can be provided in the individuals' own home, hospital, or skilled nursing facility.
Prosthetic devices, defined as "replacement, corrective, or supportive devices" to (1) artificially replace a missing body part; (2) prevent or correct physical "deformity" or malfunction; or (3) support a weak or "deformed" portion of the body.
Rehabilitative services, including any medical or remedial services recommended by "physicians or other licensed practitioners of the healing arts" for maximum reduction of physical or mental disability and restoration of individuals to their best possible functional levels [www.cms.hhs.gov/medicaid/services/rehab.asp].
Respiratory care services for individuals who are ventilator-dependent.
Screening services to detect one or more diseases or "health deviations."
Speech, hearing and language therapy are diagnostic, screening, preventive, or corrective services provided by (or under the direction of) speech pathologists or audiologists, including any necessary supplies and equipment [www.cms.hhs.gov/medicaid/services/ptot.asp].
Transportation services, including expenses for transportation and related travel expenses individuals need to obtain medical examinations and treatment. This includes the cost of (1) transportation by ambulance, taxicab, common carrier, or other "appropriate means;" (2) meals and lodging to and from medical care, and while receiving medical care; and (3) an attendant to accompany the individual (if necessary) and the cost of the attendant's transportation, meals, lodging, and salary.
In theory, adults with disabilities who are eligible for Medicaid have the "freedom of choice" to choose any medical provider they want. But doctors, hospitals, and other providers, such as speech therapists, can decide whether or not they want to accept Medicaid. Since the amount Medicaid pays - the reimbursement rate - is typically quite a bit below typical rates charged, not all providers will take Medicaid.
Medicaid is a "vendor payment" program, which means that the payments are
made directly to the doctor, hospital, or other provider. Those that take
Medicaid must accept the reimbursement level as payment in full, and cannot bill
individuals for the services
Under the federal Medicaid law, states have an obligation to set the reimbursement rates at a level that gives people equal access to doctors and medical services. The reality is that although most hospitals accept Medicaid, fewer and fewer doctors are doing so - it's a significant problem in many parts of the country.
Over the last ten years, many states have incorporated managed care into
their Medicaid programs. There are special rules for enrolling in a Medicaid
managed care program and each state's plan will look different. In some states,
these changes affect adults with disabilities and they can choose to receive
medical care through a Medicaid managed care program [www.cms.hhs.gov/medicaid/managedcare/default.asp]. In other states, adults with
disabilities do not have to participate in Medicaid managed care plans.
PART 2: MEDICAID ELIGIBILITY
Medicaid is an entitlement program, which means if people meet the
eligibility requirements, they are eligible for Medicaid benefits. States cannot
limit the number of its residents that can receive Medicaid. Basically, to be
eligible for Medicaid, an adult with a disability must be a U.S. citizen, a
state resident, and a member of one of the covered "groups." It's the definition
of the "groups" that gets us into the income and resource requirements. But
first we'll look at citizenship and residency.
Citizenship and Residency
T o be eligible for Medicaid, adults with disabilities must be United States citizens 10 or immigrants that meet certain rules [www.cms.gov/immigrants/alien1.pdf] and [www.cms.hhs.gov/states/letters/shw92100.asp]. Because Congress has placed some restrictions on the public benefits non-citizens can receive, not all non-citizens can receive Medicaid - even if they have disabilities and meet the other eligibility requirements. 11
To be eligible for Medicaid, adults with disabilities must also meet state residency rules, which generally means residing in the state from which they are seeking Medicaid benefits, although in some situations individuals can still be eligible as residents of a state even if they are absent at the time.
For example, adults with disabilities
that are dependent children or spouses of active duty members of the military
can meet the residency requirements even if the family has been transferred
Belonging to a Medicaid Group
To be eligible for Medicaid, adults with disabilities that are citizens or qualified legal immigrants, and meet state residency requirements, must belong to one of the groups that Congress has decided should receive Medicaid. Again, states have some options and choices, which is one of the reasons Medicaid can sometimes seem confusing - no two states make the same choices about which people they cover under Medicaid.
There are three types of groups:
a. Mandatory Categorically Needy;
b. Optional Categorically Needy; and
c. Medically Needy.
These terms are almost 40 years old and may not make much sense to you. Don't worry about them! Although state Medicaid agencies and some advocates will use them from time to time, it's the eligibility concept that each category reflects that is important to remember.
Adults with Disabilities that States Must
(Mandatory Categorically Needy Groups)
All States must provide Medicaid coverage to adults with disabilities that are in the Medicaid mandatory categorically needy groups:
1. SSI (or "Cash Assistance") Group - In 39 states and the District of Columbia, states automatically provide Medicaid coverage to adults with disabilities who receive Supplemental Security Income (SSI) benefits. In the remaining 11 states (called 209(b) states), some adults with disabilities will also be eligible for Medicaid but it is not automatic and there is a separate application process.12
2. Medicare or "Dual Eligible" Group13 - Limited Medicaid benefits are available to pay for out-of-pocket Medicare cost-sharing expenses for adults with disabilities that have Medicare.
a. Qualified Medicare Beneficiaries (QMBs) include adults with disabilities that receive Medicare, have income equal to or below 100 % of the federal poverty level, and have limited financial resources. Medicaid will pay Medicare premiums, deductibles, and coinsurance for eligible QMBs [www.cms.hhs.gov/dualeligibles/qmbhando.pdf].
b. Specified Low-Income Medicare Beneficiaries
(SLMBs) include adults with disabilities that receive Medicare and have income
that exceeds the QMB level but is not more than 120 % of the federal poverty
level. Medicaid will cover the monthly Medicare-Part B premium for eligible
3. SSI Recipients Who Go to Work, Also Known as the 1619 Group - For adults with disabilities receiving SSI and Medicaid who go to work, Medicaid coverage can continue even if earnings become too high for an SSI cash payment. States can also continue Medicaid for SSI recipients who have earnings from employment and who need Medicaid in order to work. As earnings increase, SSI cash benefits will decrease but Medicaid coverage continues up to a certain point, called the threshold amount (which is different in each state). See [www.cms.hhs.gov/manuals/pub45pdf/sm3410.pdf].
Adults with Disabilities "Deemed" to be
Receiving SSI - There are
also certain adults with disabilities who receive both SSI and Social Security Disability Insurance (SSDI) benefits who become ineligible for SSI because of an increase in SSDI benefits [www.cms.gov/medicaid/eligibility/ssideem.pdf]. They are "deemed" to be receiving SSI and can continue their Medicaid coverage -
a. Adults with disabilities who:
1. Received SSI at the same time as SSDI benefits;
2. Lost SSI but would still be eligible for those benefits if the total amount of the SSDI cost-of-living increases (COLAs) receive since losing SSI benefits while also entitled to SSDI benefits were deducted from income; and
3. Currently receive SSDI.
b. Adults with disabilities known as Childhood Disability Beneficiaries who:
1. Receive SSI and are over age 18;
2. Have disabilities that began before age of 22;
3. Are entitled to Social Security benefits on a parent's record due to the parent's retirement, disability or death and loses the SSI due to receiving the Social Security benefit or increases; and
4. Would continue to be eligible for SSI in the absence of the Social Security adult child's benefits or increases to those benefits.
Adults with Disabilities that States Can
(Optional Categorically Needy Groups)
States can choose to provide Medicaid coverage for any (or all) of the "optional categorically needy" groups of people. Particularly important, are the new groups Congress has added that provide continued Medicaid coverage for adults with disabilities who start or return to work. Here are the "optional categorically needy" groups that include adults with disabilities:
1. Poverty Level Group - States have the option of providing full Medicaid benefits to adults with disabilities who have income at or less than the Federal Poverty Income Level (FPIL).14 When deciding how to count income and resources for this group, states have some flexibility under Section 1902(r)(2) of the Social Security Act [www.cms.hhs.gov/medicaid/eligibility/elig0501.pdf].
2. State SSI Supplement Group - About half of the states provide state SSI "supplements" to individuals with disabilities and elders who receive federal SSI monthly benefits.15 These payments are financed with state money and vary widely, from a few dollars to almost $200. States can choose to make anyone receiving an SSI state supplementary payment automatically eligible for Medicaid.
3. 300% "Special Income Rule" Group - States also have the option of covering adults with disabilities that are in institutions and who have too much income to qualify for SSI but not enough to cover expensive long-term care. Under this "special income rule," a state can set an income limit of up to 300% of the maximum SSI benefit. [www.cms.hhs.gov/medicaid/eligibility/ssi0103.asp].
Note that this "special income rule" was originally limited to people with disabilities living in institutions, but states now can also choose to apply it to those receiving home and community-based care.
4. Tuberculosis (TB) Group - States can now choose to provide limited Medicaid coverage to adults with TB who meet certain financial guidelines. The limited services include TB-related ambulatory services, medication, and case management as they relate to treating the tuberculosis at [http://www.cms.hhs.gov/manuals/45_smm/sm_04_4_4270_to_4390.1.asp#_toc490372922].
5. Cancer Group - Under this relatively new option, states can choose to cover women who need treatment for breast or cervical cancer, have limited incomes and no insurance, and were screened and diagnosed through the Center for Disease Control and Prevention's Breast and Cervical Cancer Early Detection Program [www.cms.hhs.gov/bccpt/].
6. "Buy-In" Groups - States can choose to create Medicaid "Buy-In" programs that allow working people with disabilities to pay premiums to participate in their State's Medicaid program, similar to purchasing private health care coverage. 16 There are two types of "Buy-in" groups, and each is named for the law that created it as an option for states.
a. The Balanced Budget Act (BBA) of 1997 [cms.hhs.gov/states/letters/bba4733.asp], and
b. The Ticket to Work and Work Incentives Improvement Act (TWWIIA) of 1999 [cms.hhs.gov/twwiia/factsh01.asp].
States can design their Medicaid "buy-in" programs
by making choices and setting guidelines under either: [cms.hhs.gov/twwiia/eligible.asp
7. Medical Improvement Group - States can also choose to cover adults with disabilities who Social Security has decided are "medically improved" (in that they no longer meet SSA's definition of disability) but who still have severe impairments [cms.hhs.gov/states/letters/smd82900.asp].
The rule had been that when individuals were no longer disabled (as defined by the Social Security Administration), they would be ineligible for Medicaid under a buy-in program. States can now create exceptions to that rule by choosing this option.
Adults with Disabilities and Higher Income
That States Can Choose to Cover
(Medically Needy Group)
States can also choose to provide Medicaid coverage for people who are "medically needy" [cms.hhs.gov/states/letters/wrcvii.asp]. The medically needy group includes adults with disabilities who meet all the other eligibility guidelines for Medicaid, including meeting the definition of disability, except for having income above the guidelines that would qualify them under any of the other state-covered groups.
Individuals who qualify as being medically needy are allowed to "spend down" their income, offsetting countable income with any incurred medical expenses. This spend down process works somewhat like insurance deductibles - individuals must spend, or incur liability for, a certain dollar amount of medical expenses before insurance (in this case, Medicaid) kicks in.
States calculate spend down amounts for a specific period of time
(usually six months, but this varies) by looking at how much a person's
countable income exceeds the state-determined Medically Needy Income Level. The
result is the individualized dollar amount a person must pay or incur in medical
expenses before Medicaid will cover additional health care services and
Limited Income and Resources
Medicaid is a "means-tested" program and to be eligible individuals basically must have very low income and own very little property. The federal government sets the general Medicaid income and resource guidelines, but the states also have some flexibility, options, and choices when implementing those rules. In addition, many of the Medicaid "groups" created in the last few years include their own income and resource guidance that states must follow.
What this means is that although a state Medicaid agency's evaluation of income and resources may be a separate, distinct eligibility step for other Medicaid applicants, it doesn't really work that way for most adults with disabilities. For example, if a person with a disability is eligible for Medicaid through a state's BBA Medicaid Buy-In program, the Buy-In guidelines include specific income and resource limits (dictated by the Balanced Budget Act) that govern financial eligibility.
Still, it is often the traditional income and resource rules, calculation methods, and concepts with which state Medicaid agencies are most familiar. This means they still influence certain aspects of eligibility, particularly when looking at what income and resources are actually countable.
Income is anything a person receives that can be used to pay for food, clothing, or shelter. Medicaid rules divide income into two categories, depending on the source of the income: (1) Earned income is essentially earnings from employment, including wages, salary, or self-employment income and (2) Unearned income is income that is not earned from employment, such as interest from investments, government benefits (such as Social Security Disability Insurance, and rental income).
For purposes of Medicaid eligibility, not all of the income a person receives will necessarily count. The way states decide how much income is countable is kind of like what's done to calculate income taxes. When doing tax returns, we put down our "gross" income - the amount we've earned or received before any taxes are taken out - and then we take out any allowable deductions to come up with the dollar amount that is our "net" income.
When calculating financial eligibility for Medicaid, a person's total income
is reduced by two kinds of allowable deductions: the exemptions (income
that does not count at all) and the disregards (amounts that can be
subtracted from income) to get to that bottom line or "countable" dollar amount.
Earned and unearned income are treated differently, in that different (and more
generous) deductions are subtracted from earned income than from unearned
income. Again, states have a lot of options in deciding what income to exclude,
disregard, and deduct.
States can also look at an individual's resources when determining Medicaid eligibility. These are defined as assets, or things you own, such as cash (savings accounts) or things that you can easily convert to cash, such as cars, property, livestock, and life insurance that might have a cash value. In some states an individual may be required to spend their resources down to the resource limit before they can access Medicaid. Again, resource rules can also vary from state to state, and from eligibility group to eligibility group.
Income and Resource Flexibility: Using Section 1902(r)(2)
The Medicaid income and resource rules are linked to the income and resource
rules for the Supplemental Security Income (SSI) program in most states. The
exceptions, as discussed above, are the 11 states referred to as 209(b) states.
Section 1902(r)(2) of the federal Medicaid law gives states the flexibility to
move beyond the SSI income and resource limits [www.cms.hhs.gov/medicaid/eligibility/elig0501.pdf] and
Attachment 5-A of [www.cms.hhs.gov/states/letters/smd110a1.pdf].
This is important for a number of the "optional" groups states
can choose, but critically important when considering income and resource
limits for working people with disabilities participating in a Medicaid Buy-in
program. For example, a state can use Section 1902 (r)(2) to ensure that adults
receiving Social Security Disability Insurance, typically higher than SSI
benefits, can participate in a Medicaid buy-in program.
PART 3: MEDICAID WAIVERS
Adults with disabilities can also be eligible for Medicaid through a Medicaid waiver program. States can apply to CMS/HHS for Medicaid waivers to run demonstration projects or programs that are experimental [www.cms.hhs.gov/medicaid/waiver1.asp ]and [cms.hhs.gov/medicaid/waivers/]. Waivers allow states to ignore some of the Medicaid rules so they can target specific groups of people. Because of this, waiver programs have unique characteristics and don't really fall into any the other "groups" or categories above.
Waivers can be particularly helpful to adults with disabilities or chronic illnesses because the programs can be structured in ways that support specific needs and services, such as personal assistance services, and goals, such as moving adults with disabilities out of nursing homes and into the community and workplace. Go to[cms.hhs.gov/medicaid/waivers/waivermap.asp] to find the waiver programs in your state.
Types of Waivers
States often use Freedom of Choice Waivers, also called 1915(b) waivers [cms.hhs.gov/medicaid/1915b/default.asp]
to run case management and primary care provider managed care programs. This
means that certain groups of people receiving Medicaid can be required to
receive their primary care through a "gatekeeper" doctor and must get prior
approval for specialty care.
Home and Community-Based Waivers, the 1915(c) waivers are the most popular waivers and states use them to provide services to adults with disabilities who could be institutionalized if they didn't receive those services.18 Under these waivers, states can offer many services, such as case management, home health services, homemaker services, and environmental modifications that are not otherwise reimbursable, to specific, targeted populations - for example, adults with HIV and/or AIDS. [www.cms.hhs.gov/medicaid/1915c/default.asp.]
States also use Demonstration Waivers, Section 1115 waivers to administer experimental or demonstration Medicaid programs. Some have been used to expand Medicaid to people who were previously not covered by Medicaid, such as people who are uninsured [cms.hhs.gov/medicaid/1115/default.asp].
In order for CMS to approve any waiver, a state's proposal must meet the applicable Medicaid rules and comments from the public are usually part of the required process. In addition, states must gather extensive information on the potential costs. During the course of a waiver program, states are often required to collect data and to evaluate the impact of the program.
Waivers are typically only approved for three years, which means there is a
constant change in the numbers and types of Medicaid waivers. The Centers for
Medicare and Medicaid services keeps an up-to-date list of approved waivers by
Check out the waivers in your state! There are quite a few states that have been
very creative using waivers, including those that have waivers supporting adults
with disabilities who are working or want to work.
This Guide provides just the most basic of information about Medicaid as it applies to adults with disabilities. There are lots more details, if you want and/or need them, and the links we've provided will take you to some of those that are most relevant. But for people who are trying to get a general overview of what Medicaid is all about, The No-Nonsense Guide is a good starting place.
As we said in our introduction, individuals with disabilities,
their families and advocates, providers and policymakers, all make crucial
decisions about Medicaid everyday. It's impossible to make those decisions
without understandable information. We hope that you will read, learn, and then
share your knowledge about Medicaid. And that you will join us in looking
carefully at the choices states make and work to improve and create accessible,
comprehensive health care, services, and supports for people with
The No-Nonsense "Top 20" Checklist:
Medicaid for Adults with Disabilities in Your State
1. Name of State Medicaid program (e.g., MediCal).
2. Contact information for the State agency that administers the Medicaid program.
3. Copy of State Plan.
State-Specific Medicaid rules regarding eligibility of legal immigrants,
5. State residency requirements.
6. State's Mandatory Services covered by Medicaid and information on whether and how State makes this information available and accessible to adults with disabilities.
Whether EPSDT information is readily available and accessible to potentially
young adults (18-21) with disabilities and their families.
8. State's choices of Optional Services under Medicaid (list in detail).
9. State's Personal Assistance Services (provide detail).
10. State's Home- and Community-Based Services (provide detail).
11. State's Case Management services, including targeted case management for people with disabilities.
State's coverage of Mandatory Categorically Needy Groups, Including details on
1619(b) and Buy-In rules have been implemented, how new coverage groups are publicized
by State, and how potential group members keep their Medicaid when SSI status changes.
Whether State is SSI State or 209(b) State; if a 209(b) State, what are specific
and resource rules adults with disabilities must meet to qualify for Medicaid?
14. State's Medically Needy program, including spenddown information.
15. State's selection of Optional Categorically Needy groups, including Medicaid Buy-In.
16. State's Medicaid Buy-In program, if relevant, in detail. If state does not currently have a Medicaid Buy-In, is there one in the planning stages?
17. State's Buy-In plans - If State does not currently have a Medicaid Buy-In, is there one in the planning stages? What's been done so far?
State's use of Section 1902(r)(2) provisions to ensure more flexible income
19. Details on all of State's current Medicaid waivers that target adults with disabilities and/or chronic illnesses.
State Medicaid agency involvement in and support of adults with disabilities
want to move out of institutions and into the community, and who want to work or start
their own businesses?
1 For the text of the Social Security Act, go to www.ssa.gov/OP_Home/ssact/comp-ssa.htm. The Medicaid section of the Act is "Title XIX: Grants to States for Medical Assistance Programs," which is why some people refer to Medicaid simply as "Title 19." www.ssa.gov/OP_Home/ssact/title19/1900.htm.2 The percentage the Federal government covers for a state cannot be lower than 50% or greater than 83%. For information on your state’s current FMAP, go to: http://aspe.os.dhhs.gov/health/fmap.htm
3 To find your state’s Medicaid Web site, go to www.cms.gov/medicaid/stwebsites.asp; for your state’s toll-free Medicaid hotline, go to: www.cms.hhs.gov/medicaid/tollfree.pdf4 Also check out the State Medicaid Manual at the CMS Web site, which provides additional information and details about all the mandatory and optional services discussed here. [www.cms.hhs.gov/manuals/45_smm/sm_04_4_toc.asp] scroll down the table of contents to find the service in which you are interested.] 5 See also the excellent HHS publication Understanding Medicaid Home and Community Services: A Primer [aspe.hhs.gov/daltcp/reports/primer.htm]
6 For more detailed information on Medicaid services for pregnant women, see Section 4421 at [www.cms.hhs.gov/manuals/45_smm/sm_04_4_4395_to_4435.4.asp#_toc490379578]
7 For more information online about targeted case management as an optional service, go to [www.cms.hhs.gov/medicaid/services/tarcsemgt.asp.]
8 For more information on Home- and Community-Based Services, go to: [www.cms.hhs.gov/manuals/45_smm/sm_04_4_4440_to_4444.asp#_toc490382276] For information about the "expanded habilitation" services under HCBS, including prevocational services and supported employment, see Section 4442.3. [http://www.cms.hhs.gov/manuals/45_smm/sm_04_4_4440_to_4444.asp#_toc490382281]
9 Note that state Medicaid agencies can define "personal care services" differently for purposes of a Medicaid waiver.
10 For purpose of qualifying for Medicaid as a U.S. citizen, the United States includes the 50 States, the District of Columbia, Puerto Rico, Guam, Virgin Islands, and the Northern Mariana Islands. Individuals from American Samoa and Swain's Island are also regarded as U.S. citizens for Medicaid.11 These adults with disabilities do meet the guidelines: (1) Legal Permanent Residents legally residing in the U.S. on or before August 22, 1996; (2) refugees, asylees, or persons granted "conditional entry" for their first seven years in the U.S.; and (3) Hmong or Highland Laotian Tribe members who assisted the U.S. during the Vietnam War (and their spouses and unmarried dependent children).
12. The 209(b) states are: Connecticut, Hawaii, Illinois, Indiana, Minnesota, Missouri, North Dakota, New Hampshire, Ohio, Oklahoma, and Virginia. When the SSI program was created in the 1970s, Congress gave states the option of continuing the Medicaid eligibility standards they had in place at that time and these states have done so. The 209(b) states must allow all people with disabilities to "spend down" their income though (see discussion of the spenddown process in the "Medically Needy" section, below).13. The term "dual eligible" is not exactly accurate in this context because adults with disabilities in any of these groups are not eligible for full Medicaid coverage, only for premium and cost sharing assistance. 14. The Federal Poverty Income Level is adjusted each year. For the current levels, go to
15. To see if your state supplements federal SSI benefits, and to find out the amount of the supplement, go to [www.ssa.gov/pubs/statessi.html.]
16. For more information on the design and implementation of state Medicaid Buy-In programs, see HDA’s The No-Nonsense Guide to Medicaid Buy-Ins
17. See also the CMS guidance on integrating medically needy and spend down guidelines with other Medicaid rules that support people with disabilities going to work at [www.cms.hhs.gov/states/letters/smd110a1.pdf]
18. See also Understanding Medicaid Home and Community Services: A Primer at [aspe.hhs.gov/daltcp/reports/primer.htm.]
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