Medicaid in some states pays for services to allow elderly or disabled individuals to stay in their own homes. Historically, Medicaid-eligible people who needed help with things like remembering to take their medications, preparing their meals, bathing, and doing their grocery shopping would have been institutionalized (placed in a nursing home or other long-term care setting) to receive these services. The Medicaid program would not pay for those kinds of services unless they were provided in a nursing home or other institution.
The Social Security Act, as amended in 1981, allowed states to create Medicaid Home and Community-Based Services (HCBS) programs that would pay for home-based services for elderly or disabled individuals. States HCBS programs must be approved by the Centers for Medicare and Medicaid Services (CMS) in a process known as a 1915(c) waiver.
HCBS programs are sometimes called “waiver” programs because the state has gotten CMS to waive certain requirements of the Medicaid program. For example, a state must offer Medicaid services equally to all eligible people in the state regardless of their disabling condition. Under these rules a state couldn't run a Medicaid program that paid for prescriptions for physical conditions but not prescriptions for mental conditions. However, with a waiver a state can create an HCBS program that offers benefits to a certain population that it wants to assist, so it could offer HCBS benefits to individuals with physical conditions but not to individuals with mental conditions.
Over time, HCBS programs have become more and more popular as public opinion has become more critical of institutionalization. In 1990, Congress enacted the Americans With Disabilities Act to protect disabled individuals from discrimination and in 1999, the U.S. Supreme Court decided the case of Olmstead v. LC, holding that unnecessarily segregating disabled individuals in institutions is illegal discrimination. Medicaid HCBS programs are important tools that states can use to comply with the ADA and with the Olmstead ruling. In 2013, there are more than 300 HCBS programs in operation across the country.
States have a wide range of choices about what kinds of services they offer in their HCBS programs. Common benefits include help with household chores and meal preparation, funding for special diets, modifications to homes for accessibility, case management services, transportation services, adult day care, respite care, supported employment services (like sheltered workshops or vocational counseling), and particular kinds of therapy not funded in regular state Medicaid programs (like speech, hearing, physical, or occupational therapy).
In general, states can create Home and Community-Based Services programs to benefit disabled individuals of any age or to benefit the elderly, so long as the beneficiaries are eligible for Medicaid. However, not all Medicaid-eligible populations are eligible for HCBS benefits. States have created HCBS programs to target particular populations, and so eligibility for HCBS benefits varies from state to state.
Most states have more than one HCBS program, targeting different groups of people and offering different levels of service. For example, Oregon operates six different HCBS waiver programs, offering different benefits to groups like children and adults with physical disabilities, children and adults with developmental disabilities, and those over age 65. Other states have HCBS programs that target populations by diagnoses, like HIV/AIDS, traumatic brain injury, or autism. Your state’s Medicaid agency can tell you what HCBS waiver programs it offers.
Regardless of the state you live in, you must meet your state’s eligibility requirements to receive nursing home care before you will qualify for HCBS benefits. Congress intended HCBS benefits to help keep people in their own homes and avoid institutional care, so the benefits are not available for people who are not at risk of institutionalization. States rules about institutional level of care vary. Most require medical evidence of a particular diagnosis and/or a professional assessment about your ability to do certain activities of daily living.
If you want to apply for HCBS benefits, contact your state’s Medicaid agency to find out what HCBS benefits are available and to apply.
If you are denied Home and Community-Based Services, you have the right to appeal. Look carefully at the denial notice to see your appeal deadline, and make sure you file your appeal before that date. Also, review the notice to find out why you were denied so that you can start preparing your arguments before your hearing. You may need to get more medical records or witnesses, and that will take time.
If your state Medicaid agency says that you do not meet the "institutional level of care," find out how your state defines the level of care needed to qualify for Medicaid coverage for nursing home care. It should be in the state regulation that is listed on your denial notice. If it isn’t, you may have to ask your state Medicaid agency for the information. You will need to know what the standard is so that you can show that you meet it.
You may want to find an attorney to represent you in your appeal. You can contact your local legal aid office to find out if they represent clients in Medicaid appeals, or contact a lawyer. Federal Medicaid rules also allow you to use a relative, friend, or any other spokesperson that you choose to help you with your appeal, or you can represent yourself. Find out more about appeals in Nolo's article on Medicaid appeals.