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Designed to provide families that have a child with developmental disabilities with supportive services and medical care, Medicaid waivers play a vital role in obtaining long-term care – and creating opportunities for independent living.
The ins and outs of Medicaid waivers
As children with Cerebral Palsy grow, their parents often wonder what tools are needed to help my child receive medical and support services. An adult with disability, living independently, may wonder how he or she can remain in their home. One way to meet that end is to apply for a Medicaid waiver.
Available in 44 states, Medicaid waivers, particularly community home-based waivers, allow states to use federal Medicaid funds to provide services to people with disabilities who may otherwise live in a nursing home or residential setting. Traditional Medicaid pays for basic medical needs, such as physician’s appointments, hospitalization, and therapy; a waiver significantly builds on those benefits.
Today, most states and the District of Columbia operate Medicaid waiver programs; an estimated $54.6 billion in federal funds paid for waivers in 2011.
The services, although they are federally-funded, are organized and dispersed through the states. Qualifying criteria and the nature of services provided varies from state-to-state. Individuals that are covered with traditional Medicaid programs, as well as those covered by the Children’s Health Insurance Plan, or CHIP, are eligible as long as state and federal requirements are met.
Waivers are granted under Section 1115 of the Social Security Act, which gives the Secretary of Health and Human Services the authority to waive Medicaid provisions to allow a state to use federal funds in ways that are not otherwise allowed under federal rules. This, for waiver recipients, effectively expands eligibility for services to assist a child.
The waiver program was instituted to assist families under significant financial stress by allowing people with developmental disabilities to participate in services while remaining in their home, thereby reducing the need for institutional living.
Although Medicaid waiver services – what they will pay for, what supports and services are paid for, and who qualifies for assistance – is often determined by individual states, all waiver programs provide services that encourage supported living in private residences and family-based care.
Under the 1115 provision, states are required to ensure that waiver services meet all federal guidelines for established services, protect the health and welfare of children and adults, meet quality standards, and follow an individualized plan of care. States may also cover optional services with Medicaid matching funds.
However, states are allowed to make waiver services available to people at risk of institutionalization. Often, states will target services to people with particular conditions, or individuals with certain circumstances, such as behavioral issues or those that are dependent on technology to function. States must also monitor services to ensure a waiver recipient is well served by a provider.
Additionally, states must be able to demonstrate that services are revenue-neutral. This is achieved by placing a cap – or a limit on the dollar amount a state can use on a waiver – on federal benefits. Cap amounts are established based on enrollment levels and projected per-person costs.
Generally, a family may be eligible for several services, depending on their individual and financial circumstances, and the variety of individual waivers available in their state. The types of services they may receive include:
- Support services – These include services that are rendered in a person’s home. Professional staff assists the waiver recipient with self-care tasks such as bathing, dressing, paying bills, house cleaning and maintenance, running errands or grocery shopping.
- Residential habilitation – A person may receive services in a home or an apartment that is owned or leased by a service provider. Where these dwellings are located – in a home or an apartment complex – depends on several factors. In some cases, states will place limits on how many people can live in a residence and receive services. Often, residential habilitation encourages living in a setting that does not include relatives.
- Day services – Operated by local non-profits, service organizations, and schools, day programs provide children with disabilities a chance to participate in their communities, such as sports programs, crafts, field trips and other activities.
- Supported employment – This service helps waiver recipients find employment in his or her community. Often, the employment is the result of an existing relationship or program designed to help individuals with developmental disabilities expand their skills. These arrangements may, or may not, include direct on-the-job supervision by a service provider.
- Respite care – Short-term, or respite, care may be provided to family members that live with a child or relative with disabilities to allow the person responsible for caring for an individual to rest or tend to personal business.
- Transportation – In some cases, transportation services are provided to an individual to allow them to attend appointments, run errands and go to work.
- Therapeutic and home health supports – Medicaid waivers can pay for therapies such as physical, occupational, behavioral, psychological, speech/language services, audiology, nutritional and health services while a person is at home.
These services are designed to help people with developmental disabilities receive the same services at home that they would receive in an institutional setting:
- Equipment and technology – Waivers often can be used to help finance specialized equipment designed to enhance a person’s mobility or communicability. Waivers may cover equipment or technology that is not covered by private insurance.
- Physical modifications – Changes that must be made to a dwelling to help a person move within his or her home, such as a ramp, removal of obstructions, widening doors or installing flooring may be covered with a waiver.
- Vehicle modifications – Waiver funds can be used to pay for such things as a van lift, a portable ramp, wheelchair tie downs or brackets, or a specialized seat belt.
- Case management – Case management includes professional coordination of services that help keep a waiver recipient on track with all aspects of his or her individual plan.
Waivers are generally available to persons that receive traditional Medicaid services, or CHIP. To date, there are four primary types of waivers that parents can apply for. An applicant may be eligible for more than one, or none of the programs, depending on state limits and federal requirements.
The four types of waivers, as outlined in the U.S. Social Security Act, are:
- Section 1115 Research and Demonstration Projects: Under this waiver, states can provide services to an individual through a flexibility provision that allows state governments to assess and test new approaches to financing and delivering Medicaid or CHIP services. The programs must meet the objectives of the Medicaid and CHIP programs. They are intended to expand eligibility of people that might not qualify for Medicaid or CHIP assistance, and provide services not typically covered by traditional Medicaid. Demonstration of projects must be formally evaluated by the federal government.
- Section 1915(b) Managed Care Waivers: This waiver gives states the opportunity to provide services through managed care organizations that would typically be subjected to limits. This gives applicants more provider options. Under this waiver, states are permitted to restrict the types of providers that applicants can use to receive Medicaid services. The provision also gives local governments the right to act as a counselor to assist people in choosing a managed care plan.
- Section 1915(c) Home and Community-Based Services: Services that are commonly provided in a hospital or institutional setting are provided in the home. The waiver is designed to reduce the number of individuals being cared for in institutional settings. Services can be provided on a long-term basis as long as an applicant continues to meet federal requirements. Programs can provide a combination of medical and non-medical services, including but not limited to case management, adult day care, home health services, day services and respite care. Generally, services are rendered through managed care delivery as opposed to a fee-for-service system.
- Concurrent Section 1915(b) and 1915(c): A provision that allows the state to simultaneously implement two types of waivers to provide continuous services to people with disabilities.
A “waive” of assistance
Studies that assess the health, well-being and happiness of individuals with disabilities indicate the same result: People that have physical, intellectual or developmental challenges are healthier and happier in independent living situations. For that reason, the Medicaid waiver program was created – to give people with developmental disabilities an opportunity to thrive individually.
Surprisingly, many parents do not know about the existence of Medicaid waivers, which have the potential to benefit a child as they cycle to adulthood. However, there is little effort on behalf of the federal government or state governments to publicize such programs.
Because many parents face challenges in terms of finances, a Medicaid waiver can be a welcome form of assistance in terms of improving a family’s standard of living. Waivers can also relieve a parent of the every day stresses of a caring for a child with a disability.
As much as a family has to gain from obtaining a waiver, there are also drawbacks. Depending on the socioeconomic outlook within a state, the limits they impose on the number of people who can receive community-based services can be limiting while waiting lists can be significant.
Another problem is that waivers are not portable, meaning that they cannot be taken out of state. Meaning, if a family chooses to move out-of-state for an employment opportunity, or to be closer to other family members, they must forfeit their services and re-apply in the new location. This often means another long waiting period, more financial stress, and more time that a person with a developmental challenge may not be able to live independently.
There is disparity in terms of benefits offered from state to state. In some states, wide-ranging services are provided to individuals; in others, few services are available. This is often a mechanism of a state’s authority in terms of setting its own budget priorities, which means the level of services can be influenced by a state’s economic condition and its political climate.
A Medicaid waiver is an agreement between the participating state and the Federal government. The state agrees to cover a portion of the costs and the Federal government agrees to their portion. Each state has an individual, and differing, agreement with the Federal government in how the waiver is administered, funded and overseen. To the consumer, this means that the benefits their state delivers differs from the benefits that are offered in another state.
If a parent is considering applying for a waiver, they should determine what benefits are available in their state, what the eligibility requirement is, how to apply, and what paperwork is required for application.
A word about personal services
Federal 1915(j) waivers allow a parent to hire a personal care assistant through a voluntary, self-directed program.
The personal care program allows parents to procure services provided under 1915(c) programs that states have in place. The attendant program allows a parent to set their own qualifications for an individual that would work with his or her child.
Medicaid pays for the service after a participant has developed a service plan and the cost of the service and supports have been established. Limits on the amount of payments apply.
Under the program, parents can hire legally liable and qualified relatives, manage a cash disbursement for the service, purchase goods and supplies – anything that will encourage a child’s ability to live at home.
For families that include a child with disabilities, Medicaid waivers can provide the help a child deserves and the assistance his or her family need. To find out if a Medicaid waiver may help your child, contact your state’s Department of Human Services or Department on Disabilities today.
Is my child eligible for a Medicaid waiver?
In a virtual sea of rules and regulations, it can be difficult to determine whether a child or family is eligible for a Medicaid waiver. Here’s some valuable information to help a parent determine whether they should apply for one.
Medicaid waivers are intended to help families that include a member with a developmental disability with additional resources that exceed those provided under the United States’ Medicaid and CHIP program.
Determining eligibility for a waiver can be a challenging process; not only must a family meet federal income and financial requirements, the availability of services from state to state makes the process more complex, and more elusive.
A parent should contact his or her state Department of Human Services which typically handles all matters related to public assistance. There, a parent can start the ball rolling by applying for traditional Medicaid. For contact information and online links to your state’s Medicaid Waivers, call MyChild call center at (800) 692-4453.
As a general rule of thumb, people who are eligible for Supplemental Security Income also qualify for Medicaid. Like all aspects of Medicaid, income requirements are set by individual states; other influential factors include how many children are in a family and if a child has a disability or a health issue.
Once a parent qualifies for Medicaid or CHIP, the door is open to look at waivers. Waivers then can be used to procure services that help a parent manage their child’s condition.
To apply for a waiver, a child must meet a set of pre-determined requirements. These include:
- A developmental disability that occurred before the age of 18; or a high probability that a child has a developmental disability before the age of 5;
- An income that does not exceed the amount allowed under Medicaid;
- A demonstrated need for community-based services commensurate with those that would be received if the child lived in an institution; and
- Be in a position to receive services and supports that will keep a child safe and cared for.
Because states are afforded the right to tailor services to the needs of groups of people with particular conditions or circumstances, states may impose varied criteria to target such populations. A qualified Medicaid caseworker will be able to explain how these mechanisms are used to evaluate a family’s eligibility and award.
When a parent applies for a waiver, he or she needs to bring every available document to demonstrate his or her financial need, as well as a child’s condition. A parent must be able to demonstrate two things; the first of which is their general qualifications for traditional Medicaid. IRS forms, pay stubs, tax returns, spousal support documents, mortgage and expenditure documents – anything related to an applicant’s income and financial status – must be brought to a caseworker.
The second piece of an application is a child’s condition. This includes information, especially clinical evidence, that a parent can provide a caseworker to demonstrate a child’s needs – for medical attention, therapeutic services, personal care and services – is equal to or greater than those they would require in an institutional setting. Required information about a child’s diagnosis or condition will greatly affect the outcome of any waiver application.
As part of the application process, caseworkers may schedule an appointment to have a child assessed using the Supports Intensity Scale – a tool that determines a child’s needs from a practical standpoint – to help make a determination regarding a child’s eligibility. This may include a personal interview with a child and his or her family. These processes, along with other information provided by the parent, will determine not only eligibility, but also the amount of money that will be set aside to provide waiver services.
Continuity of services
Generally waivers are granted for five years, but once they are granted to a person, he or she will likely have to demonstrate their continued need for services.
States may require a waiver recipient to undergo periodic physical examination to determine their need for continued services. A caseworker will tell parents when, and how often, these evaluations will take place.
As part of the re-evaluation process, a parent will be asked for a form that states that a child is developmentally disabled. The form must be signed by a pre-determined, qualified medical professional. A parent will likely be required to submit the form to maintain waiver services.
Because a child’s Cerebral Palsy is a fixed condition, changes in his or her income will likely be a factor that could disqualify him or her from receiving waiver services. However, as federal funds contract, it’s possible that income guidelines can be revised. If this occurs, a parent or caregiver will be notified regarding a child’s continued waiver eligibility.
How do I apply for a Medicaid waiver for my child?
Applying for a Medicaid waiver can be a long process. Here’s how the application process will likely transpire, and what to do if an application is denied.
Medicaid waivers are designed to help financially-strapped families expand the number of services that are available to them under the country’s Medicaid and Child Health Insurance Plan programs. But applying for a waiver means that a parent will have to go an extra mile to obtain the diversified services.
The process begins where so many other social services originate: An applicant’s state Human Services department. There, an applicant will fill out forms, provide information, and meet with a caseworker that can help them determine if they qualify for waivers under various state and federal provisions.
Although steps will vary from state to state, the process most often begins when a parent completes paperwork with a Human Services’ caseworker or coordinator. Support coordinators – or individuals that advise a parent on what type of services may benefit his or her child – will help a parent navigate the process of applying for a Medicaid waiver and identify potential service providers that offer services that will enhance a child’s ability to live at home.
The first step after gathering all of the necessary paperwork that demonstrates a child’s condition is often a home visit. During this visit, a caseworker or Human Services professional will likely make a note of a child ability to live in his or her environment. Also, the caseworker may ask for additional information about a child’s physical health and psychological well-being.
Once this is complete, the coordinator will compile an Individual Support Plan, or ISP, or outline what services a waiver recipient requires. The plan will specify what a caseworker believes would be most beneficial to a child in terms of services, what a parent’s preferences are, and goals for the child. The plan will also include a risk assessment that will outline issues that may cause harm to a child, and a back-up plan if the risks are too great to assume.
The caseworker will conduct evaluations which include the Supports Intensity Scale and Health Risk Assessment to determine the appropriate level and cost of required services and supports.
Additionally, a caseworker will likely help a parent determine whether they would like to seek assistance through area providers, or self-direct services.
A parent that is applying for Medicaid, or a Medicaid waiver, must be willing to provide significant information to a caseworker so that they can render a decision on the application. During this process, a parent will be asked to furnish information that proves that his or her family income does not exceed limits put into place by the federal government. In the event a waiver is granted, parents will be asked to furnish information about their income periodically.
Then, the state agency will send a copy to the federal Center for Medicaid and CHIP Services, which will be approved, or denied, under the current Medicaid provisions.
For more information
For more information on Medicaid, in general, visit Medicaid.
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