DISCUSSION OF FUNDING SOURCES FOR ASSISTIVE TECHNOLOGY

            This article will discuss the following potential funding sources for AT:

1         the public schools, including their special education programs and obligations under section 504 of the federal Rehabilitation Act

2         state vocational rehabilitation agencies

3         Medicaid

4         Medicare

5         SSI's Plan for Achieving Self Support

For each funding source, we will go through the key criteria to obtain funding for AT, including:

1         How one becomes eligible for the program or service

2         The criteria that program follows for covering AT devices and services, and the likelihood that the program would fund the devices sought by Sharon

3         Any appeal procedures for challenging a denial of funding

I.                   The Public Schools: Special Education Programs and Section 504 Obligations

A.                 The Special Education System

1.                  Eligibility for Special Education Services

            The special education rights of children and parents, as well as the responsibilities of school districts, are spelled out in a major federal law, the Individuals with Disabilities Education Act (IDEA).⁸  The IDEA guarantees, in every state, that all eligible children with disabilities receive a free appropriate public education, which is designed to meet their unique needs.  It must be at no cost to the parents or student.  Since there can be no income test for special education services, it does not matter, for example, that Sharon's parents have an annual income of $60,000.  The income could be half that amount or double that amount and she would be eligible for the same services.

            The IDEA applies to all students aged 3 through 21, or until the student receives a regular high school diploma.  To qualify for special education services, a child must have a disability, such as a speech, mobility, orthopedic, health, hearing or visual impairment, mental retardation, or a learning or emotional disability, because of which the child requires special education and related services.  Special education is defined as specially designed instruction to meet the unique needs of the child.  Related services are defined as developmental, corrective and other support services required to assist a student with a disability to benefit from an education and include occupational therapy, physical therapy, speech pathology, counseling, health services, and parent training.  Sharon is eligible for special education and related services (i.e., speech pathology, occupational therapy and physical therapy), even though she attends all regular classes.  This is because she needs the extra services to adequately benefit from her education.

            The IDEA also requires that students receive their special education assistance in the least restrictive environment appropriate to meet their needs.  This means that removal from regular education classes occurs only when a student cannot be successfully educated in regular classes, even with “supplemental aids and services.”  When a student is removed from the regular educational environment for part of the day, the student must still be educated with nondisabled peers as much as possible.

            The needs of the student and the services to be provided must be designated, in writing, on an individualized education program (IEP).  The IEP must be developed at a meeting with a group of people, including the parents and teachers.  The IEP must specify all of the educational services planned for a child, including the child's placement, the special education services, and any supplementary aids or related services.  The IEP will also indicate how often these services will be provided.  The IEP Team must review the IEP at least once per year and more often if requested by a parent or teacher.

2.                  Eligibility for AT Through Special Education Programs

            In 1990, the IDEA was amended and the definitions of AT were added. AT may be considered as special education, related services or supplementary aids and services to ensure placement in the least restrictive environment.  The services are to be decided upon by the IEP Team and indicated in the IEP.⁹

            Any request for special education services, including AT, should be made, in writing, to the IEP Team.  This starts the process to determine what, if any, AT may be necessary to meet the child's educational needs.  Before the IEP Team can determine a child's need for AT, it is required to obtain an appropriate evaluation.  If the parent disagrees with the findings of the school district's evaluator, the parents can request that the school pay for an independent evaluation.

            The key question is whether the AT is needed to ensure that the student receives a free appropriate public education.  The decision must always be made based on the individual needs of the student as determined by the participants at the IEP Team meeting.  AT can be approved if it is needed to assist the child to achieve meaningful educational progress, remain in the least restrictive setting, or prepare him or her for the transition to adult life.  AT should always be considered before a decision is made to place a student in a more restrictive setting.

3.                  Sharon's Need for AT

            The AAC device is an item that special education programs have frequently funded.  It would meet the definition of AT device as a supplementary aid or special education service.  As her only effective means of communicating with teachers and peers, it will ensure that Sharon can effectively participate in the regular classroom.  If specialized software is needed, or if training is needed to learn how to use the AAC device, those items would be AT devices and services, respectively, and could also be approved by the special education system.  Finally, in order to fully learn to use the device and benefit from its use, Sharon should be allowed to take it home, despite any increased chances of damage to this expensive item.¹⁰

            The laptop computer with specialized keyboard and voice input software are items that can be funded through a special education system.  They will become important to Sharon as she and the special education system plan her “transition” from the public school system to college and eventual employment.  The school may argue that she does not need the laptop to benefit from her education, as she can use the computers in the school library.  Sharon may counter that the laptop is needed to meet the increased homework demands during her last two years of high school.  Since the special education program has an obligation to prepare Sharon for the transition to higher education, her later need for the laptop will be an added argument for providing it while she is still in high school.  Based on the limited facts we are given, it appears that Sharon will have a strong case for the computer and accessories, which may depend on how well she is able to both succeed in high school and prepare for the transition to college without them.

            Since both the AAC device and the laptop (or one dual purpose device) will be very important to Sharon as she enters college, it will be very important that any devices she receives during high school stay with her as she leaves.  This can be a problem, as most special education programs around the country will retain ownership of equipment purchased by them and the equipment will remain with the school when the student graduates.  For this reason, Sharon may wish to investigate funding of these items by another entity, such as Medicaid or her state's vocational rehabilitation (VR) agency, that will allow her to retain ownership.¹¹

            The special education program will probably not be responsible for purchasing the ceiling track lift, the access ramp, or the modified vehicle as they are not directly connected to whether Sharon benefits from her education.  Nor are they needed, as special education or related services, to prepare her for the transition to adult life.  However, a special education system will be responsible to provide Sharon with accessible transportation to and from school, including any off site programs that are part of her curriculum.  Based on the facts presented, it would also not appear that the school is responsible for the power wheelchair, as it is not needed for Sharon to benefit from her education.  Special education programs have been required to pay for mobility equipment, like wheelchairs, under limited circumstances.¹²  In Sharon's case, it appears that she can propel her manual wheelchair to meet her needs in the public school.  Her problem will occur when she goes to Cornell University or another college.

4.                  Appeals  -- What if the Parent Disagrees with the IEP Team?

            Any time a parent or guardian disagrees with the services proposed on the IEP, a hearing can be requested.  The parent has the right to be represented by an attorney or other advocate and can present witnesses and other evidence in support of the appeal.

            The current program is to remain in place while any appeal is pending.  For example, if last year's IEP provided for use of a special computer and this year's IEP eliminated that provision, a hearing request would guarantee that the computer is provided during the course of the appeal.  Additionally, if a student moves from one school district to another in the State, and the new school district refuses to recommend the computer and the parents request a hearing, the new school district must provide the computer until the case is resolved.

B.                 The Public Schools and Section 504

            The rights of children whose disabilities do not meet the criteria for special education, but who still may need some specialized assistance, including AT, are covered by section 504 of the Rehabilitation Act of 1973 (section 504).¹³  Under section 504, schools must take reasonable steps to ensure that these students have access to the full range of programs and activities offered by the school.

            To determine a student's eligibility and needs, school districts may choose to simply use the IEP Team procedures and IEP.  If other procedures are used, they must include the following:

1         the student must be provided with a comprehensive, individualized evaluation of his or her needs, with regular reevaluations;

2         the decision about eligibility and services must be made by a group of people, including the parents, knowledgeable about the child, the evaluation information, and the placement options;

3         the student's needs must be specifically identified in writing; and

4         parents have due process rights if they disagree with the district's recommendations, including the right to an impartial hearing.

Section 504 does not include the right to an independent evaluation at school district expense.¹⁴  However, it does include the right to “status quo,” i.e., the continuation of existing services pending an appeal.¹⁵

            In the event that Sharon did not meet the criteria as a special education student, section 504 would still be available to ensure that she has full access to the school and its services.  For example, to allow Sharon to move about the school, section 504 may require the installation of access ramps to allow her to enter and leave the building.  It may also require the installation of an elevator to allow her to reach various locations in the school.  If the school provides computers in its library to all students, section 504 would require that adaptations be provided to allow Sharon to use the computers despite her severe disability.

II.                Vocational Rehabilitation Agencies

A.                 Eligibility for VR Services

            State vocational rehabilitation (VR) agencies can play a critical role in assisting people with disabilities to enter the work force.¹⁶  VR services are to empower individuals to maximize employability, economic self-sufficiency, independence and integration into the work place and the community through “comprehensive and coordinated state-of-the-art programs.”¹⁷  The comments to the 2001 regulations reaffirm this “maximization” requirement.  They note that States must “look beyond options in entry-level employment for VR program participants who are capable of more challenging work.”¹⁸

            An eligible individual must be disabled and require VR services “to prepare for, secure, retain or regain employment.” Persons must show a mental, physical or learning disability that interferes with the ability to work.  It need not be so severe as to qualify the person for SSDI or SSI benefits.  It need only be a substantial impediment to employment.   Recipients of SSDI or SSI disability benefits are presumed to be eligible for VR services, if they intend to achieve an employment outcome.  Although VR services may be denied if a person cannot benefit from them, a person is presumed capable of employment, unless the VR agency shows by clear and convincing evidence they cannot benefit.  Any service an individual is to receive from the VR system must be connected to an ultimate employment goal.

            The written Individualized Plan for Employment (IPE) lists the employment goal and the specific services to be provided.  This plan is to be developed by the consumer, with assistance from the VR counselor if requested, and approved by the VR agency.  Prior to developing the IPE there must be a comprehensive assessment, to the extent necessary to determine the employment outcome, objectives and nature and scope of VR services.  It may also include a referral for the provision of rehabilitation technology services, “to assess and develop the capacities of the individual to perform in a work environment.”

            The VR agency must ensure that all necessary services are provided to equip the individual for employment.  It cannot choose to provide only some services to eligible individuals to save costs.  The “severity of an individual's disability or the cost of services can have no bearing on the scope of services the individual receives.”¹⁹

            The services available from the VR system are incredibly broad and varied.  The following are representative VR services under which AT could be funded: (1) an assessment by someone skilled in rehabilitation technology (i.e., AT); (2) services needed for the diagnosis and treatment of physical or mental impairments, including prosthetic and orthotic devices, eyeglasses and visual services; (3) transportation, including the purchase and repair of vehicles, including vans; (4) interpreter services, readers, rehabilitation teaching, and orientation and mobility services; (5) AT, including vehicular modification, telecommunications, sensory, and other technological aids and devices; (6) transition services for students with disabilities; (7) other goods and services determined necessary to achieve an employment outcome; and (8) post-employment services necessary to assist an individual to retain, regain or advance in employment.

            States need not consider financial need when providing VR services. However, any financial needs test must take into account the individual's disability-related expenses.  The individual's level of participation must not be so high as to “effectively deny the individual a necessary service.”  SSI and SSDI recipients are totally exempt from any financial needs test.

            The following services must be provided without regard to financial need: (1) diagnostic services; (2) counseling, guidance and referral services; (3) job placement; (4) personal assistance services; and (5) “any auxiliary aid or service,” such as interpreter or reader services, that the individual needs to participate in the VR program and which would be mandated under section 504 of the Rehabilitation Act or the Americans with Disabilities Act.

            VR agencies will not pay for a service if a comparable benefit is available through another provider.  For example, if an applicant qualifies for personal assistance services through Medicaid, the VR agency will not provide them.  But, loans, which must be repaid, are not similar benefits.²⁰  A Plan for Achieving Self Support (PASS) is not a comparable benefit.²¹  Additionally, AT is exempt from the comparable benefit requirement.

B.                 Eligibility for AT

            Most of the items listed in the Sharon scenario, above, can potentially be funded through a state VR agency if she can establish: i) that she needs the item to reach her vocational goal; and ii) that she meets the VR agency's financial need criteria, if any.²²  Generally, she would also need to show that she has exhausted any comparable benefits that may be available to pay for the item.  However, since each of the items sought should meet the definition of an AT device or service, their funding is exempt from the comparable benefit requirement.

            More than likely, the VR agency will refer Sharon to either Medicaid or Medicare (if she is eligible for those programs) to fund the power wheelchair and AAC device, even though those items are exempt from the comparable benefit requirements. Both Medicaid and Medicare will routinely fund those items when they are medically necessary.  Sharon should be encouraged to foster good will with the VR agency by first seeking Medicaid or Medicare funding for these items.

            The laptop computer, with accessories, and the access ramps are items that are likely to be funded through the VR agency if Sharon can show they are necessary for the success of her vocational plan.  It is less likely that Medicaid or Medicare will be able to fund these items.²³  Sharon need not exhaust SSI's PASS as a potential funding source as that is not considered a comparable benefit.

            The ceiling track lift is a more difficult argument.  A VR agency can fund home modifications, under the category of rehabilitation technology, when necessary to allow a person to leave the house to attend a training program, set up a home business, or go to work.  The ceiling track lift, which is typically used to get a person to and from the bed or bath, may be viewed more like a personal hygiene aid.  Sharon's best approach is to argue that the ceiling track lift, like the access ramp and the van modifications, is necessary to get her out of the house and to school.

            In a few states, the VR agency will fund a vehicle lease or purchase if needed to participate in a VR program. It is clear that the federal VR regulations permit a state to fund vehicles, but less clear whether it would require that they do so in all cases.²⁴  Under the facts presented, however, one should argue that since the purchase or lease of a vehicle would be less expensive than a private transportation service to and from college for four years, a vehicle should be purchased or leased for Sharon.  In all states, the agency should pay for the modifications to allow Sharon to get into the van and drive it from her wheelchair.

C.                 Hearing and Appeal Rights

            Anyone dissatisfied with a decision by the VR agency has the right to appeal.  Appeals can be pursued through mediation or an administrative hearing before an impartial hearing officer.  The Client Assistance Program (CAP) is available in every state to assist individuals who have questions or who are appealing a VR decision.

            At a hearing, the individual has the right to be represented by an attorney or other advocate.  The individual can present evidence and cross examine witnesses.  The hearing decision is final and must be implemented, unless appealed.  Either party may appeal a final administrative decision to court.  However, pending review in court, the final administrative decision must be implemented.

III.             Medicaid

A.                 Eligibility for Medicaid

            Medicaid, also known as Medical Assistance, is a cooperative federal-state program authorized by Title XIX of the Social Security Act.²⁵  It is a health insurance program, designed to serve persons with limited income and resources.  Although every state has the option of whether or not to have a Medicaid program, every state has exercised that option.  Administration of Medicaid will occur at the state level, with the state Medicaid agency often delegating decision making to other state agencies, to county or local Medicaid units, or to managed care organizations.  Medicaid can pay for a wide range of health-related costs for both children and adults with disabilities, including many of the items sought by Sharon.

            Medicaid is typically the only or primary health insurance plan for persons with disabilities who have limited income.  Additionally, an increasing number of individuals with disabilities are looking to Medicaid as their primary health insurance plan, notwithstanding higher levels of income.  Medicaid may be available to those individuals through state-specific Medicaid waivers, through optional Medicaid buy-in programs, or through the section 1619(b) provisions.

            Medicaid eligibility will vary somewhat from state to state.  Generally, the majority of persons with severe disabilities will become Medicaid-eligible in one of two ways: through the SSI program or through the medically needy program.  In 39 states and the District of Columbia, an individual eligible for SSI is automatically eligible for Medicaid.  If the SSI check is as little as $1, Medicaid eligibility is guaranteed.²⁶  In most of these states, an SSI application is also a Medicaid application and no additional action is needed to ensure Medicaid eligibility.  However, the following states require a separate Medicaid application: Alaska, Idaho, Kansas, Nebraska, Nevada, Oregon, Utah, and the Northern Mariana Islands.

            In 11 states, known as section 209(b) states, Medicaid eligibility is not automatic for SSI recipients.  These states use their own Medicaid eligibility criteria which differs from SSI eligibility criteria.²⁷  The states which exercise the 209(b) option are: Connecticut, Hawaii, Illinois, Indiana, Minnesota, Missouri, New Hampshire, North Dakota, Ohio, Oklahoma, and Virginia.²⁸

            Four separate categories of former SSI recipients can retain automatic Medicaid eligibility as if they were still receiving SSI.  These include:

1         Recipients of Social Security Widow's/Widower's Benefits.  If a person loses SSI when he or she becomes entitled to widow's or widower's benefits under Social Security, the person will remain automatically eligible for Medicaid if SSI eligibility would continue in the absence of the widow's or widower's benefits.  Eligibility continues only for so long as the person remains ineligible for Medicare, a period of 24 months following the first month of Social Security eligibility.²⁹

2         Recipients of Social Security Disabled Adult Child's Benefits.  Recipients of Social Security Child's Insurance Benefits, often referred to as Disabled Adult Child's (DAC) benefits, can continue eligibility for automatic Medicaid if, after July 1, 1987, the person lost SSI due to entitlement to or an increase in DAC benefits.³⁰

3         The Pickle Amendment.  This protects certain persons who lost SSI because of cost of living increases in Social Security benefits since April 1977.  Automatic eligibility continues if the person would be eligible for SSI under present eligibility standards if Social Security cost of living expenses since April 1977 are disregarded.³¹

4         The Section 1619(b) Program.  This provides Medicaid for individuals who lose SSI benefits because earnings become too high to continue receiving cash benefits.  Under 1619(b) criteria, automatic Medicaid will continue if the person would continue to be eligible for SSI if the wages were ignored and if annual income is less than a specified income threshold.³²  The 1619(b) eligibility thresholds will usually change each year and will vary state by state.³³

            The Medically Needy Program, often referred to as a spend down, is an option exercised by approximately two thirds of the states.  Medically needy individuals are those who would qualify for Medicaid, including individuals who are disabled, but have income or resources above limits set by their state.³⁴  Since Medicaid eligibility workers often do not explain the spend down program to applicants or recipients, it is important that you find out if your state offers this option and take steps to educate yourself on how it works.  At a minimum, you should keep up to date on your state's medically needy income eligibility levels for various sized families.

            How does the spend down work?  Each state will set its own medically needy income level based on family size.  All individuals meeting the federal (i.e., SSI) definition of disability, who have income and resources below their state's medically needy level, automatically qualify for Medicaid.

            Individuals with income above the medically needy level do not automatically qualify for Medicaid.  They must first meet a “spend down” or “share of cost” test.  The spend down is the amount by which the individual's income exceeds the medically needy level after subtracting allowable deductions.  Consider this example: In New York, which has a 2002 one-person medically needy level of $634 per month, a single adult with a disability receives a monthly SSDI check of $754.  Since this exceeds the state's medically needy level of $634, the Medicaid agency will disregard the first $20 as an unearned income exclusion and the individual will face a $100 spend down (i.e., their countable income exceeds the medically needy level by $100).  The spend down acts like a deductible or insurance premium that must be paid or incurred before the insurance program, i.e., Medicaid, begins coverage.

            The optional Medicaid Buy-In Program is an important way for individuals with disabilities to obtain or retain Medicaid coverage when they are working.  It is designed to provide health insurance to working people with disabilities who, because of relatively high earnings, cannot qualify for Medicaid under another provision. The buy-in was originally made available as part of the federal Balanced Budget Act of 1997.  The enhancements to this optional program have been touted as some of the more important provisions of the Ticket to Work and Work Incentives Improvement Act of 1999.  As this document is written, approximately 15 states had adopted and were implementing buy-in programs, with an additional 20 or more states at various stages of pre-implementation (including several that had been adopted and were awaiting federal approval, and several pending in state legislatures).  You may wish to check the status of the buy-in program in your state.

            The buy-in program is most important to those individuals with disabilities who have significant health care needs that cannot be met through employer-sponsored health benefits plans and have no ability to obtain or retain Medicaid when working for significant wages.  Most often, the group that will benefit most will be recipients of SSDI, who were not simultaneously eligible for SSI and, thus, cannot qualify for Medicaid under the section 1619(b) program.  Many of these individuals currently receive Medicaid through medically needy programs and could not afford to work if it meant giving up Medicaid as the source of payment for expensive items like prescription drugs, personal assistance services, and durable medical equipment (i.e., AT).  In those states that have implemented buy-in programs, eligibility for Medicaid can continue in many cases at annual wage levels exceeding $40,000.

            Subject to federal criteria, a state can choose to structure the buy-in as it sees fit.  Largely due to fears of rising Medicaid costs, only five or six states had initiated buy-in programs when the Ticket to Work and Work Incentives Improvement Act (TWWIIA) was signed into law in December 1999.  TWWIIA sought to make the program more attractive to states.

            Key federal eligibility criteria for the original, 1997 buy-in include:

1                   Eligible individuals must be in a family whose net income is less than 250 percent of the federal poverty level.  A single individual is in a family of one.

2                   Except for the individual's earnings, the person with a disability would be considered eligible for SSI benefits.  This includes the definition of disability.

3                   Each state determines its own definition of a “family.”

4                   All SSI exclusions apply to the determination of family income, including the earned income exclusions.

5                   Individuals are not required to have been on SSI to be eligible for this new Buy-In provision.

6                   The State must make a disability determination if an individual was not an SSI recipient.

7                   Substantial gainful activity (i.e., in 2002 earnings in excess of $780 monthly) is not an eligibility consideration.

8                   States can increase the resource limits to as high as $14,000.

9                   States can charge premiums or other cost-sharing charges.

            The 1999 TWWIIA legislation builds on the 1997 legislation, adding provisions that make it more attractive to states:

1                   It allows states to offer a Medicaid buy-in to persons with disabilities who work and have earnings between 250 and 450 percent of the federal poverty level.

2                   Participating states are allowed to set income limits and require cost-sharing and premiums, based on income, on a sliding scale.  A state could require some individuals to pay the full premium as long as the premiums do not exceed 7.5 percent of the individual's total income.

3                   States must require a 100 percent premium payment for individuals with adjusted gross incomes greater than $75,000 unless states choose to subsidize the premium using their own funds.

B.                 Eligibility for AT Through Medicaid

            The categories of service covered by Medicaid will vary greatly from state to state.  This is because the majority of Medicaid service categories are optional.  A state must cover all “required” categories of service, such as inpatient hospital care and home health care services for persons eligible for skilled nursing services.  A state may choose which of approximately 30 “optional” categories of service to cover.

            Typically, state Medicaid programs have covered AT under one or more of the following coverage categories: home health care (which includes medical supplies and equipment, commonly referred to as “durable medical equipment”), prosthetic devices, physical therapy (PT), occupational therapy (OT), speech therapy,³⁵ rehabilitative services, and transportation.  With the exception of home health care, all of these categories are optional for adults, meaning that some states will cover them and some will not.

            Children under age 21 are covered under a special mandatory program, known as the Early and Periodic Screening, Diagnosis and Treatment (EPSDT) program.  Under federal Medicaid law, a state is required through its EPSDT program to cover all of the required and optional services for Medicaid-eligible children under age 21 even if some of those optional categories are not covered for adults.³⁶  The statutory language, governing EPSDT, would seem to support a very expansive view of when a child will receive AT under the EPSDT program.  A service must be covered for a child if it is among the required or optional services and is “necessary . . . to correct or ameliorate defects and physical and mental illnesses and conditions.”³⁷

C.                 Sharon's Eligibility for AT

            Sharon will become eligible for SSI disability benefits at age 18.  Her parents' income and resources will no longer be counted against her and her SSI payment will be based on her own income and resources.  She will then become Medicaid-eligible in those states in which Medicaid is automatic for SSI recipients.  In other states, she may be eligible under the medically needy program, with or without a spend down.  Once eligibility is established, she will be eligible through EPSDT for coverage under all of the required and optional service categories.  This will provide the maximum possibilities for coverage of the AT-related items she is seeking.

            Every state's Medicaid program should cover the power wheelchair and AAC device if Sharon can show that they are medically necessary. Typically, these items would be covered as durable medical equipment.  The AAC device has also been covered in some states as a prosthetic device or under the equipment clause of the speech therapy category.  Some Medicaid decision makers will balk at approving the power wheelchair, claiming that she can get around in most environments with her lightweight, manual wheelchair.  In some states, Sharon may need to appeal (see below) to establish that the power wheelchair is needed to meet all of her mobility needs, particularly as she begins spending time on a college campus within a hilly community.

            The ceiling track lift could also be covered under Medicaid's durable medical equipment category.  The controversy here will not focus on whether a lifting device is needed; instead, some Medicaid programs may argue that a less costly, stationary lifting device can meet her needs.  Again, Sharon may need to appeal to establish her right to the preferred ceiling track lift.  In any case in which a Medicaid agency seeks to limit the person to the less expensive device, it will be critical to have the supporting documents from doctors and other health professionals address why the lesser item falls short of meeting the person's needs.  If a Medicaid-funded personal care aide is needed to operate the stationary lift, but is not needed to operate the ceiling track lift, that may help show that the stationary lift is actually a more expensive alternative in the long run.

            The access ramp for the home is an item that many Medicaid programs will balk at funding.  A typical response will be to say that it is not primarily medical in nature or is a matter of convenience rather than a medical necessity.  The authors are aware of several cases, in different states, in which access ramps or stair glides within the home have been approved following a hearing.  In some states, a separate Medicaid waiver program may cover a range of home modifications as an exception to general rules for those who qualify for the waiver.

            A Medicaid program would not be expected to pay for a laptop computer, its accessories, or the van.  These are not items one thinks of as meeting a medical purpose or as being medically necessary.  Keep in mind, however, that there are several dual purpose AAC devices on the market that double as laptop computers.  Often, these are no more expensive and sometimes less expensive than dedicated AAC devices that meet the same communication needs.  Unlike Medicare,³⁸ most state Medicaid programs will pay for dual purpose devices, especially when they are the least costly alternative for meeting the individual's communication needs.  We can also expect state Medicaid programs to balk at paying for the van modifications.  However, we are aware of two hearing decisions from New York and an unreported court decision from Colorado in which vehicle modifications were approved to meet the needs of either a driver or a passenger with a disability.

Medicaid Waivers Can Fund AT

            Individuals with disabilities and their advocates should not be too quick to rule out potential funding of items which appear to fall outside the scope of Medicaid.  Every state will have one or more special waiver programs, typically referred to as Home and Community Based Services Waivers.  These waivers, which are optional, will vary greatly from state to state.  When approved by the federal Health Care Financing Administration (HCFA),³⁹ a state is permitted under a waiver to provide a range of services, to special populations, that are not available to Medicaid recipients generally.⁴⁰

            Many states, through Medicaid waivers, will provide a range of very expensive services if they are necessary to keep a person in the community and out of an institution.  These typically include a range of home modifications, including ramps, lifts, stair glides, and other items, that are a challenge to obtain through the standard Medicaid program.  One of New York's waiver programs will, under limited circumstances, pay for van modifications if they are needed for the transport of a child with a disability in a van owned by the parent or parents.⁴¹  Since no two states will operate identical waiver programs, the individual or their advocate must investigate to determine what waivers are available in their state.

D.                Appealing Medicaid Decisions

            Requests for funding of AT will typically go through a prior approval process.  If the request for funding is denied, federal law requires that the Medicaid recipient be given a written notice that details the reasons for the denial and informs the recipient of his or her right to a fair hearing.⁴²  A fair hearing must be available to any individual whose prior approval request is denied or not acted upon in a reasonably prompt manner.  An individual who is denied AT through a Medicaid waiver program is also entitled to a written notice of the decision and the right to a hearing to challenge that decision.

            State Medicaid agencies must inform recipients of the method to obtain a hearing and the ability to be represented by an attorney or other representative.  Since the time limits for requesting a hearing will vary from state to state, it is critical to read the denial notice for an explanation of these time limits.  The Medicaid recipient has the right to be represented by an attorney or advocate, or can proceed without a representative.  As with all the administrative hearings described in this article, the individual has the right to call witnesses, present written evidence, and confront and cross-examine adverse witnesses.  The federal regulations require that the hearing decision be issued within 90 days.

IV.              Medicare

A.                 Eligibility for Medicare

            Medicare is the nation's largest health services funding program.  This federal health insurance program covers three primary classes of recipients:

1                   persons age 65 or older

2                   persons receiving SSDI payments (including many adults with developmental disabilities who receive SSDI on the earnings record of a parent, and many who receive SSDI as widows or widowers)

3                   persons with end stage renal disease

There is also a class of Medicare-Qualified Federal Employees who can qualify for benefits.⁴³  SSDI recipients who have exhausted their nine-month trial work period can continue to qualify for Medicare, even if they cease eligibility for SSDI cash benefits, during a 93-month extended period of Medicare coverage.⁴⁴  During the extended coverage period, the individual can receive Medicare under the same terms as described below (i.e., cost-free Part A coverage; optional Part B coverage, with a premium).  After the end of the extended coverage period, the individual can pay for coverage under the Premium-Hospital Insurance for Disabled Working Individuals program.⁴⁵

            Medicare is divided into two parts, known as Part A and Part B. Medicare Part A, known as hospital insurance, covers inpatient care, nursing home care, hospice care, home health services and durable medical equipment.  For most Medicare beneficiaries, there is no premium required to obtain Part A coverage.  Medicare Part B, known as supplemental medical insurance, covers various outpatient services, including physician services, durable medical equipment, prosthetic and orthotic devices, and home health services.  To enroll in Part B, a Medicare beneficiary must pay a monthly premium ($54 in 2002).  State Medicaid programs may pay the Part B premiums for persons with low income.  This usually is done through the Qualified Medicare Beneficiaries (QMB) or Specified Low-Income Medicare Beneficiary (SLMB) programs.

            Most Medicare recipients receive benefits through the “traditional” Medicare program.  Generally, this means that they are to obtain benefits and then submit claims to a company which contracts with Medicare to oversee the claims reimbursement process.  A minority of Medicare recipients receive benefits through a “managed care” option, now referred to as the Medicare+Choice program.  The managed care option exists in most parts of the country and is run through any number of local or regional health maintenance organizations.  The managed care option, as it relates to claims for AT coverage (see section B, below), is subject to a prior approval process.

            The facts indicate that Sharon, at age 17, receives Social Security survivor's benefits on her deceased father's Social Security record.  Moving forward in time, we can assume that Sharon will cease to be eligible for survivor's benefits when she graduates from high school as an 18 year old.  At that time, based on her severe physical disability, she should qualify for SSDI benefits as a Disabled Adult Child.  After 24 months of eligibility for SSDI, she will then become eligible for Medicare.

B.                 Eligibility for AT Through Medicare

            Medicare, through its Part B benefit, will cover AT devices, such as the power wheelchair or AAC device sought by Sharon, under its durable medical equipment (DME) coverage category.  Medicare has a four-part definition for DME.  It is defined as equipment which:

1                   can withstand repeated use;

2                   is primarily and customarily used to serve a medical purpose;

3                   generally is not useful to a person in the absence of an illness or injury; and

4                   is appropriate for use in the home.

            When Medicare covers DME, it pays for 80 percent of a Medicare approved rate.  The 20 percent co-payment would be Sharon's obligation, but it could be covered through Medicaid if she is also eligible for that program.  The co-payment could also be covered by a private insurance program.  The Medicare approved rate is sometimes less than what the vendor traditionally charges for a piece of DME.  If the DME vendor agrees to accept the lower approved rate, then the individual will owe 20 percent of the approved rate.  However, if the vendor refuses to accept that rate, then the individual could owe far more than 20 percent of the purchase price.

            The DME vendor should be familiar with Medicare's process for approving payment.  In traditional Medicare (the majority of cases), one of four DME Regional Carriers (DMERCs) will be responsible for claims.  In the optional managed care or Medicare+Choice program, all claims will be subject to a prior approval process with claims submitted to the HMO through which the individual is enrolled.

            The Medicare Coverage Issues Manual, maintained by HCFA, contains a DME reference list.⁴⁶  The list contains the names of more than 100 pieces of DME and then indicates either 1) that the item is “covered,” and under what circumstances it can be approved; or 2) that the item must be “denied.”  For example, the reference list provides that power wheelchairs are covered if the person would be unable to propel a manual wheelchair, a criteria that Sharon should be able to meet.  It would be important, however, that any medical letters submitted to support the request indicate that Sharon needs the power wheelchair for all significant mobility, not just for travel on the college campus.

            Readers must be cautioned that many of these coverage status listings are binding only on decision makers prior to the administrative law judge (ALJ) level of appeal.  So, for example, AAC devices, which historically appeared on the reference list as “augmentative communication device” or “communicator,” had a coverage status listed as “deny - convenience item; not primarily medical in nature.”  Notwithstanding that status, an ALJ was not bound by that policy and we are aware of more than 10 ALJ decisions in which the decision awarded funding for an AAC device.  It is only as of 2001 that Medicare officially covers AAC devices.⁴⁷  Under that new policy, Sharon should be eligible for Medicare funding of the AAC device because she cannot effectively communicate without one.

            There will be AT devices which appear to meet Medicare's DME definition and do not appear on the reference list.  In those cases, the decision maker is authorized to approve funding on a case by case basis if the item is “reasonable and necessary for the individual.”  The ceiling track lift would appear to fit into this category, as this category of DME does not appear on the list.  Sharon's best argument is that the lift performs the same mobility or travel function as the wheelchair, cane, crutches, or walker which are all covered to allow the individual to ambulate.

            It is clear that Medicare will not cover the laptop computer, the van or the van modifications.  The laptop computer does not meet that part of the DME definition that requires that the item be “primarily and customarily” used to serve a medical purpose.⁴⁸  Regarding the van and modifications, since part of the definition of DME requires that an item be “appropriate for use in the home,” even the van modifications (which, arguably, are medical equipment) cannot be covered under Medicare's DME category.

            A better argument can be made for Medicare to cover the access ramps, but Medicare has traditionally not covered items like ramps, and stairway elevators specifically appear on the reference list as non-covered convenience items that are not considered medical in nature.  Since the authors are aware of at least one case in which funding for a stair lift was awarded on appeal, Sharon could be encouraged to seek funding for the ramp in an appeal.

C.                 Appealing Medicare Decisions

            The appeals system governing Medicare denials for DME coverage will vary slightly, depending on whether an individual is covered through the traditional program or through the managed care option.  The time periods for requesting appeals will also vary depending on the level at which the most recent decision was made.  For these reasons, the consumer or his/her advocate should carefully read the denial notice for instructions on how to appeal and the time limits for doing so.

            The charts below detail the different rules governing Medicare appeals.  Again, when in doubt, the safest course of action is to follow the appeal instructions in the denial letter.

V.                 SSI's Plan for Achieving Self Support  ⁴⁹

A.                 Eligibility for a PASS

            SSI is a needs-based program.  An SSI recipient must have limited income and limited resources.⁵⁰  The PASS allows a person with a disability to exclude income and/or resources, which would otherwise be countable under SSI, when the excluded money is to be used for some occupational objective.⁵¹   By doing so, the person retains SSI, becomes eligible for more SSI, or becomes eligible for SSI as a new applicant.

            The PASS enables an individual to achieve an occupational objective, i.e., self-support, through use of this excluded income and resources.  For example, the PASS may enable a person to secure education or training needed to become self-supporting, to make the transition into employment, or to set up a business.  In a case like Sharon's, the PASS can be used to purchase items like the van or laptop computer if those items will help pave the way to her vocational goals.

            The proposed PASS must be submitted to SSA in writing, preferably using SSA Form 545.⁵²  Chances for approval are enhanced if great care is taken to document fully, on SSA's form, the person's needs and the viability of the proposal as a means of attaining self-support.  Anyone, including the SSI applicant or recipient, can write a PASS.  The authors recommend involvement of an advocate or other trained specialist in writing the PASS.

            A number of items must be contained in the written PASS, including:⁵³

1         a designated occupational objective;

2         specific savings/planned disbursement goals directly related to the objective;

3         a list of items or activities requiring savings or payments and anticipated amounts;

4         a specific period of time for achieving the objective;

5         identification and segregation of any money or other resources being accumulated and conserved; and

6         a detailed business plan when self-employment is a goal.

            A PASS can generally be approved for up to 48 months.⁵⁴  A PASS may be extended beyond the 48 month limit, in intervals up to six months, as necessary to allow the person to achieve his or her goal.⁵⁵  The allowance for any number of six-month extensions will help persons who, because of a disability, cannot complete a typical college program in four years.  The extensions can also help individuals, like Sharon, whose vocational goal requires a Master's or professional degree program.

B.                 Using a PASS to Fund AT

            The money set aside under a PASS can be used for anything that can be specifically tied to achieving an occupational objective.⁵⁶  Just as there are limitless ways that people make money, there is no real limit on the types of proposals that can be approved.

            In recent years, there has been an increase in the uses of technology, including AT, and other creative approaches to allow persons with disabilities to achieve self-support.  Advocates should not be shy about encouraging individuals to use the PASS for funding creative approaches to self-support, including the use of cutting edge technology.  Legislative history to the 1972 Social Security Act amendments indicates that the provision in the law for the PASS should be liberally construed if necessary to accomplish the self-support objective.⁵⁷

            The following is a nonexclusive list of uses for the income or resources set aside under the PASS.  Any of these items can be funded if reasonable and necessary to achieve the individual's vocational goal:⁵⁸

1         Attendant care

2         Basic living skills training related to the work goal

3         Child care

4         Costs for room and board when attending educational, training, employment, trade, or business activities

5         Dues and subscriptions for publications for academic or professional purposes

6         Equipment, supplies, operating capital and inventory required to establish and carry on a trade or business

7         Equipment/tools either specific to the individual's condition or designed for general use

8         Meals consumed during work hours

9         Operational or access modifications to buildings, vehicles, etc., to accommodate disabilities

10         Tuition, books, supplies and all fees and costs imposed by or in connection with an educational or occupational training facility including tutoring, testing, counseling, etc.

11         Uniforms, specialized clothing, safety equipment and appropriate attire (e.g., suits and dresses) for job interviews or working in an office or professional setting

12         Maintenance costs for any of the above items

13         Transportation costs, including: lease, rental or purchase of vehicle, subject to the limitations on installment payments,⁵⁹ public transportation and common carriers, fuel costs, registration fees and initial cost of insurance premiums

14         Job coaching/counseling services

15         Job search or relocation services

16         Preparation fees for developing a PASS (but fees for monitoring a PASS are not   allowed)

17         Taxes and government-imposed user fees (e.g., permits, licenses) connected with obtaining any of the above

18         Finance and service charges connected with obtaining any of the above

            It should be emphasized that most of the items listed as fundable through the PASS are potentially fundable through other means.  Much of what is listed can be funded through a state VR agency.⁶⁰  Much of what is medically related can be funded through Medicaid or Medicare.⁶¹  Availability of various other educational grants and loans should also be explored.  The person should be advised to look to the PASS as a source of supplemental funding for these items, or as the source of funding for items that generally cannot be funded through other means.

C.                 Using the PASS for Sharon

            The easiest way to understand how the PASS works is to look at Sharon's case.  Since the income of Sharon's parents, including her stepparent, will count until her 18^th birthday,⁶² we should consider the PASS to take effect on or after her 18^th birthday (i.e., December of her senior year).  If the facts do not change, Sharon may be eligible for an SSI check to supplement her $420 SSDI check (e.g., a $145 SSI check in a state that does not supplement the 2002 federal benefit rate of $545 per month).

            Sharon needs a specially modified van in order to pursue her career goal of becoming a lawyer.  In fact, all of the needed items could potentially be funded under a PASS if Sharon can show that they are necessary to achieve her vocational goal.  The vehicle purchase, however, is the one item for which she may have to rely on the PASS.  If she buys a van, the VR agency will most likely be able to pay for most, if not all, of the special modifications needed.⁶³

            Sharon decides to set up a PASS to help fund the purchase of a van, proposing, as of her 18^th birthday, to deposit $400 of her monthly SSDI check into a specially-designated account.  As noted above, under SSI regulations and policy, Sharon can save money under an approved PASS for up to 48 months, or for a longer period if individually approved.  In this case, Sharon chooses a period of 48 months for the PASS.  She will then use the money toward purchase of a van, in order to pursue her occupational objective.  Under SSI regulations, the money in the special bank account will not be considered a countable resource.⁶⁴  In addition, the $400 of her SSDI that is set aside will not be countable income for SSI purposes.  Therefore, her SSI payment will be increased to $545.  Thus, in 48 months' time, without affecting the amount of her disposable income for monthly living expenses, Sharon will be able to accumulate $19,200 plus interest, possibly enough to pay for the van and the first year's insurance premium.

            In a state that pays the 2002 SSI federal benefit rate (FBR), with no state supplement, this is how Sharon's SSI check would be calculated:

            Total Income:                                     Total Expenses for PASS:

            $420  unearned                                                $400 per month

            $    0  earned

            SSI Calculation:

            $420  Unearned income

          -  400  PASS expense

                20

           -   20  Unearned income exclusion

            $   0  Total countable income

            $545 SSI federal benefit rate

            -    0  Countable income

            $545  Total SSI check

            In the above example, the PASS will enable Sharon to achieve a number of things:

1                  accumulation of more than $19,000 toward the purchase of a vehicle;

2                  the leveraging of $10,000 or more from her state VR agency to pay for van modifications;

3                   maintenance of monthly income, for living expenses, at or near the same level;⁶⁵

4                  retaining automatic eligibility for Medicaid in most states (ensuring a continued funding source for AT and many other items); and under various public and subsidized housing programs and the food stamp program, ability to disregard income set aside under a PASS.⁶⁶

D.                Using "Deemed Income" to Fund a Vocational Objective: PASSes for Spouses and Children

            If the income of a spouse or parent is high enough, a part of that income will be considered available to the SSI applicant or recipient.  In determining the SSI eligibility of a married person, part of the income of an ineligible spouse is deemed available to and considered as income of that married person.  Similarly, part of the income of an ineligible parent or stepparent is deemed available to and considered as income of a child under 18 years old.⁶⁷  In Sharon's case, a part of her parents' $60,000 in annual wages would be deemed available to her and make her ineligible for SSI.  Like any other form of income that is considered available to an SSI recipient, deemed income can be used to fund items in a PASS.

            Let's change the facts in Sharon's case.  Assume she is 16 years old and lives with her mother and 12 year old brother.  There is no other parent in the household.  She was getting a full $545 SSI check until her mother went to work.  The countable deemed income is now $50 over the monthly limit for SSI -- i.e., the deemed income is $595 per month in a state that pays the 2002 federal benefit rate of $545 per month.  Accordingly, Sharon will no longer be eligible for SSI.⁶⁸

            A PASS is proposed to put $595 of the mother's monthly wage into an account to save for the van to allow Sharon to attend college to prepare to become a lawyer.  When the PASS is approved, the deemed income will no longer be counted by SSI and Sharon will qualify once again for a $545 SSI check.  She will also remain qualified for Medicaid.  If Sharon saves this money for two full years, or until deeming stops on her eighteenth birthday,⁶⁹ she will be able to save nearly $14,000 in her PASS fund.  She may also wish to put into the PASS account any lump sum she received for retroactive eligibility if she was recently approved for SSI following an appeal.

            In Sharon's case, the PASS can also be used to fund any number of other items which specifically relate to her long-term vocational goal.  For example, she may wish to save money toward the specially-adapted computer equipment or a specially-designed school desk and seating system.

            Unfortunately, the PASS has been ignored as a way to use deemed income to fund items related to a person's vocational goal.  For example, based on statistics compiled by SSA, as of June 2001 there was only one PASS in existence, nationwide, for a child under age 18 that involved the exclusion of income.⁷⁰  It is unclear if that PASS involved the use of deemed income to fund the child's vocational goal.  Hopefully, that number will go up dramatically as we all look to the PASS as an option for children under age 18.

E.                 Appeals - What if a PASS Proposal is Denied?

              The denial of a PASS proposal, or any part of the proposal, is considered a decision affecting the right to SSI benefits and is subject to the SSI appeals process.  This involves three potential appeals before the SSA (reconsideration, administrative law judge hearing and Appeals Council) and a potential appeal to the federal district court.  Following any adverse decision (i.e., denial of the proposal, or the denial following a reconsideration or hearing), the PASS applicant is allowed 60 days from receipt of that decision to request an appeal or review of the most recent decision.

            The first level of appeal, reconsideration, is before a person at SSA who played no part in the initial denial.  That appeal can be on papers only or it can be through a face-to-face meeting.  The hearing level appeal is before an administrative law judge who is independent of the decision makers who previously denied the PASS proposal.  At the hearing, the judge will accept written documents, and testimony of the PASS applicant and any witnesses.  The Appeals Council level of appeal is a paper review typically based on the hearing decision, any evidence and testimony from the hearing, and any written arguments submitted on behalf of the person appealing.

CONCLUSION

            This article has provided numerous examples of how AT can help a person overcome the affects of their disability on the road to work.  We have also discussed five key, federally-sponsored programs that are potential funding sources for the AT devices and services that Sharon, in the hypothetical, would need to take all the steps necessary to achieve her final vocational goal.  The five funding sources discussed will exist in every state and, with the exception of the options for states under Medicaid, the federal requirements governing the programs will be the same in every state.⁷¹

            There are many other potential funding sources for AT not discussed in this article.  These include private health insurance plans, the federally-sponsored State Children's Health Insurance Program, state-specific programs, and charities.  There are also SSI work incentives, in addition to the PASS, that could be used to help fund AT devices like those sought by Sharon.  These include both impairment related work expenses and blind work expenses as exclusions from earned income.⁷²  Enforcement of anti-discrimination laws, such as the Americans with Disabilities Act or section 504 of the Rehabilitation Act, can also help to overcome the barriers that often exist for persons with disabilities in public transportation systems, colleges, and places of employment.  Specifically, enforcing those laws can establish the right to AT-related interventions to enable persons with disabilities to move into the world of work.

            Individuals who work for a BPA&O project or PABSS program can play a critical role in helping SSI or SSDI recipients to identify potential AT funding sources that will help them overcome barriers to employment.  If the AT funding request is denied, they can advise the individual on appeal procedures and direct them to an attorney or advocate who can represent them in the appeal.  Some PABSS programs may decide to represent individuals in these appeals when the AT in question will help the person overcome a barrier to work.⁷³  Other PABSS programs and BPA&O projects may wish to refer the individual to one of the other Protection and Advocacy (P&A) programs, such as the P&A for Assistive Technology program.