AT ADVOCATE
Newsletter of the National Assistive Technology Advocacy Project
A Project of Neighborhood Legal Services, Inc.
295 Main Street, Ste. 495 · Buffalo, New York 14203 · (716) 847-0650
(716) 847-0227 FAX · (716) 847-1322 TDD · e-mail: atproject@nls.org · Web Page: http://www.nls.org
Supported by the National Institute on Disability and Rehabilitation Research,
U.S. Department of Education, Through a Subcontract with United Cerebral Palsy Associations.
Opinions expressed herein are not necessarily those of either the National Institute on Disability and Rehabilitation Research or United Cerebral Palsy Associations

INTRODUCTION

    Both Congress and the Social Security Administration (SSA) recently proposed major policy changes to encourage more persons with disabilities to work. On January 28th, the Work Incentives Improvement Act was introduced in the Senate. On February 16th, SSA issued a proposed regulation to raise from $500 to $700 the average monthly earnings considered to be substantial gainful activity under the Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) programs. Underlying these proposals (see boxes, pp. 146 and 147), is the belief that many SSDI and SSI beneficiaries do not work because they fear losing benefits.

    Although the proposals promise better work incentives for persons with disabilities, the current rules offer some powerful incentives to work under the right circumstances. This article discusses the major SSDI, SSI, Medicare and Medicaid provisions that come into play when a person with a disability works. Although this short article cannot cover all these provisions in depth, we do key on the ways to use those provisions to help leverage money for assistive technology (AT).

    SSDI is a cash benefit program administered by SSA. A person who has worked and paid a sufficient amount into the Social Security trust fund will qualify if he or she has a disability which meets SSDI’s criteria. A person can also qualify if he or she is a dependent of a wage earner who is now retired, disabled or deceased. For example, many adults who became disabled before age 22 receive SSDI benefits on the earnings record of a mother or father.

    Medicare is a federal health insurance program. A person will qualify for Medicare after two years of SSDI eligibility. They will qualify for Medicare Part A automatically. Part A, known as Hospital Insurance, will pay for hospital bills and other inpatient care. Medicare Part B, known as Supplemental Medical Insurance, is optional and requires payment of a premium. The 1999 premium is $45.50 per month. In many cases, the Medicaid program will pay the Part B premium for a person who is eligible for both Medicaid and Medicare.

    Medicare Part B has been used to fund AT, including custom and power wheelchairs, augmentative communication devices (ACDs) and stair glides. In the case of ACDs and stair glides, an appeal will most likely be needed to establish eligibility for funding. New York’s AT Advocacy Project has an appeal pending involving Medicare’s denial of funding for two stair glides. We have copies of hearing decisions from four cases in which ACDs have been approved by Medicare following a hearing. (A feature article on Medicare appears in our June-July 1997 issue of AT Advocate.)

    SSI is also administered by SSA. It is available to persons with limited income and resources who are aged, blind or disabled. Our focus is on SSI for persons with disabilities. The 1999 monthly SSI Federal Benefit Rate (FBR) is $500. Our examples will use the $500 FBR with no state supplement.

    SSI can be one’s only source of income or it can supplement other income. For example, Karen receives $320 in SSDI benefits. The SSI program will disregard the first $20 of SSDI and subtract the remaining income from the SSI base rate. Her monthly SSI check will be $200 ($500 - 300).

    Medicaid, sometimes called Medical Assistance, is a health insurance program for persons with limited income and resources. In 39 states, a person who qualifies for any amount of SSI benefits will also qualify for Medicaid automatically. In the other 11 states, known as Section 209(b), Medicaid eligibility will be determined separately. These 11 states include: Connecticut, Hawaii, Illinois, Indiana, Minnesota, Missouri, New Hampshire, North Dakota, Ohio, Oklahoma and Virginia.

    Medicaid is important to persons with disabilities as it can pay for many health-related expenses, including expenses for doctors, therapists, prescription drugs, home health care and hospitalization. It can also pay for AT or what Medicaid often calls "durable medical equipment" (DME). Items of DME which Medicaid has paid for include: custom and power wheelchairs, scooters, augmentative communication devices, specialized cribs and beds, environmental control units, ramps and stair glides.

    Under SSDI rules, a person who works and has average gross earnings of $500 or more per month is considered to be performing substantial gainful activity (SGA). Unless this person’s wages can be reduced below $500 by using one of the work incentive rules, this person would ordinarily be denied benefits if he or she is first applying for SSDI. For 1999, the SGA amount is $1,110 per month for persons who are legally blind. The SGA amount for the blind goes up each year. [See box, below, regarding SSA’s proposal to raise the SGA amount to $700.]

    An SSDI recipient who works is entitled to a nine-month trial work period (TWP). During the TWP, the person can keep both paycheck and SSDI check no matter how high the wages are. At the end of the TWP, the person enters an Extended Period of Eligibility (EPE). The first three months of the 36-month EPE is a grace period and they will get benefits for those three months. After that, the person will not receive a check for any month when gross wages are more than $500. In months when wages are less than $500, the person will get an SSDI check.

    An impairment related work expense (IRWE) is a cost incurred, that is related to the person’s disability which allows him or her to work. If an expense meets IRWE criteria, it will be deducted from gross monthly wages to determine countable wages. Countable wages are then mesured against the $500 rule. The IRWE criteria breaks down to a three-part test: 1) the expense must be paid by the individual; 2) the expense must be related to his or her disability; 3) the item purchased or expense paid must allow the person to work.

    Many AT-related expenses could qualify as IRWEs. These include:

• Payment for a transportation service for persons who are mobility impaired
• Purchase of special adaptations on a vehicle, such as hand controls or a wheelchair lift
• Construction of ramps or lifts to allow a person to leave the home
• Purchase of a telecommunication device for the deaf (TDD) to allow a person to perform work-related tasks in an office or from home
• Purchase of specialized or modified office equipment (e.g., desks, phones or computers) to work in an office or from a home office

(Some AT-related expenses could be the employer’s obligation under the Americans with Disabilities Act, a topic we will cover in a future issue of AT Advocate.)

    Consider Jennifer, who receives SSDI benefits and uses a wheelchair. She has two doorways widened and a ramp constructed at her home at a cost of $4,800 which she agrees to pay in 24 monthly payments of $200. The modifications allow Jennifer to leave the home for a job which pays $650 gross per month. The $200 expense will qualify as an IRWE and allow Jennifer to reduce her countable monthly earnings to $450. Since countable earnings are now less than $500, Jennifer will not lose her SSDI benefits even if she has finished her trial work period. Under IRWE policy, installment payments can be deducted each month during the term of the loan or installment contract. (Remember, the SGA amount may have increased to $700 by the time you read this newsletter.)

    Consider Sidney, who is blind, is applying for SSDI and earns $1,200 gross per month. (Remember, SGA for the blind is $1,110 per month.) Sidney must pay $200 per month to hire a driver to drive him to and from work. Since this qualifies as an IRWE, it will be deducted to reduce his countable wages to $1,000. Since $1,000 is less than the $1,110 SGA limit for the blind, he is not performing SGA and his SSDI application will not be denied on that basis. The IRWE calculation would be the same if instead of incurring the $200 for the driver, Sidney made $200 per month installment payments on the purchase of a braille printer for his home office.

    A person who completes a trial work period and continues earning more than $500 in monthly countable wages will lose SSDI benefits. So long as their disability continues, however, the person is eligible for continued Medicare for 39 months following then end of the TWP. During those 39 months, Medicare will provide the same coverage that it has all along. If, for example, a person needs a replacement power wheelchair two years after the end of the TWP, the wheelchair will be covered if the Medicare criteria is otherwise met.

    Even after the 39 months, a person can receive continued Medicare. If the former SSDI recipient is still disabled and is willing to pay a higher monthly premium, he or she can receive continued coverage. Depending on the nature of items which Medicare covers for the individual, this additional benefit can be very valuable.

    The $500 SGA rule, described above, applies to SSI applicants but not to SSI recipients. If one is applying for SSI, $500 in average countable earnings will amount to SGA and the application will be denied on that basis alone. As discussed above, the IRWE rules can be used to reduce countable income when measuring it against the $500 rule. (There is no SGA rule in the SSI program for persons who are legally blind.)

    IRWEs can also reduce countable income when calculating the amount of an SSI check. IRWEs can be used on application to make a person eligible for SSI, or they can be used to make the recipient eligible for a larger check.

    Consider Ronald, who had polio as a child. He lives alone in a home which he owns. Recently, in his 50s, his mobility problems have worsened. Ronald receives $320 in SSDI benefits and earns $565 in gross wages per month. The combined income makes him ineligible for SSI. He is eligible for Medicare, but would not be eligible for automatic Medicaid as an SSI recipient.

    Ronald takes out a home improvement loan to make a spare bedroom into a home office that will accommodate his disability, with a widened doorway and specially designed work station to allow him to work from his wheelchair. After obtaining the loan and having the work done, Ronald will make monthly payments of $200 per month for the next three years. These payments would qualify as IRWEs and reduce countable wages below $500 for SGA purposes. The IRWEs will also reduce his countable income for calculating the SSI check.

    This will be Ronald’s SSI budget if he applies for SSI after taking out the loan:

Step 1     Unearned income                  $320
               Exclusion                                - 20
               Counted                                $300

Step 2     Earned income                      $565
               IRWE deduction                    -200
                                                           $365
               Earned income exclusion        - 65
                                                             300
              Additional 50% exclusion       -150
              Counted                                 $150

Step 3    Counted unearned income      $300
              Counted earned income           150
              Total counted income              $450

Step 4    Base rate                                $500
             Counted income                       -450
             SSI benefit                                $ 50

    For every additional $2 in IRWEs, Ronald’s SSI check will increase by $1. For example, if Ronald has difficulty typing due to arthritis and purchases a special keyboard for $100, he will have an additional IRWE of $100. However, under the formula above, his earned income would only be decreased by $50 and his SSI check would increase by $50 to $100 per month.

    For Ronald, the eligibility for this minimal SSI check makes him automatically eligible for Medicaid in 39 states. This is important, since Medicaid may pay for many items which Medicare will not cover, including prescription drugs and more extensive home health care in many states. Also, since Medicare will pay no more than 80 percent of the cost of AT, Medicaid is available to pay the 20 percent copayment.

    In calculating the SSI check, persons who are legally blind are allowed many deductions from earned income which are not allowed for any other disability. The most common blind work expenses (BWEs) include: federal, state and local income taxes; Social Security taxes; mandatory pension contributions; meals consumed during work hours; training to use an impairment related item or an item that is reasonably attributable to work (e.g., cane travel, braille, computer course for computer operator); a guide dog (cost of purchase and all associated expenses, including food, licenses and veterinary services); transportation to and from work; attendant care services (in the work setting, to get a person to and from work, and, in some cases, in the home); structural modifications to the home to get a person to and from work; and medical devices and supplies.

    Consider Sam, who is legally blind, lives alone and makes $20,220 in gross wages per year, or $1,685 per month. He has the following monthly expenses that qualify as BWEs:

Income taxes (federal, state and local)                  $   70
Social Security tax                                                 105
Union dues                                                              10
Transportation                                                         75
Guide dog                                                               20
Lunches ($5 per day)                                             110
Readers                                                                 100
Cassette tapes                                                         25
Computer discs                                                       10
Total                                                                  $ 535

Calculation of SSI check:

Step 1 Total earned income                              $ 1685
Exclusions ($65 + $20)                                         - 85
                                                                          1600
Additional 50% exclusion                                    - 800
                                                                            800
Blind work expenses                                           - 535
Countable income                                                  265

Step 2 Base rate                                                 $ 500
Counted income                                                  - 265
SSI benefit                                                          $ 235

    For every additional $1 in BWEs, Sam’s SSI check will increase by $1. For example, if Sam purchases a special mini-computer to take notes at meetings and makes payments of $65 per month on the item, he will have an addition $65 in BWEs. This would increase his total BWEs to $600, reduce his countable income to $200 and increase his SSI check to $300.

    Like IRWEs, BWEs are only deductible if they are paid by the SSI recipient. In this example, if Sam’s employer had paid for his readers, braille paper and cassette tapes as a reasonable accommodation under the Americans with Disabilities Act, those expenses would not qualify as BWEs.

    Persons with disabilities who lose SSI because of increased wages will often continue to qualify for Medicaid. This is very important because many jobs provide either no health insurance coverage or inadequate coverage. Even very good health insurance plans typically do not cover extensive home health care benefits such as the benefits available from Medicaid in many states. Although some plans may cover a wide array of AT devices, this will vary from policy to policy. When AT devices are covered, most policies require a copayment of 20 percent or higher. (For a more extensive discussion, see our two-part series on private insurance in our February-March 1998 and April-May 1998 issues of AT Advocate.)

    Consider Mark, who is deaf and receives SSI benefits of $500 per month. Mark obtains a job which pays $18,000 per year or $1,500 per month. With that level of income, Mark will lose his right to an SSI check. He can probably continue to get Medicaid benefits under the 1619(b) program in many states.

    A person who loses SSI benefits because of wages will qualify for 1619(b) Medicaid if:

• His or her disability continues
• Unearned income is within SSI limits
• Resources are within SSI limits
• He or she uses Medicaid now, expects to use it or would need it for unexpected health needs (everyone should meet this test)
• Annual income from wages is below a "threshold"

    In New York, the 1998 annual wage limit or threshold for 1619(b) was $28,736. The 1999 threshold has not yet been announced. Your state’s threshold may be higher or lower as it is based, in part, on a state’s per capita Medicaid expenditures. So long as annual wages are below the threshold and the other criteria are met, Medicaid will continue and can continue indefinitely. If a person has very high expenses, such as those covered by Medicaid or those that would qualify as IRWEs, a much higher "individualized threshold" can be established. For example, we are aware of persons with very high expenses related to home health care (covered by Medicaid in New York) who have 1619(b) eligibility thresholds of $40,000 or higher.

    The right to continued Medicaid under 1619(b) can be very important to persons with high medical costs, such as those related to psychiatric treatment, prescription drugs, home health care or AT. For example, a person could use 1619(b) Medicaid to obtain expensive replacement power wheelchairs or augmentative communication devices despite income well above that allowed by SSI.

    SSI’s Plan for Achieving Self Support (PASS) can also be a very important source of funding for AT. The PASS allows an SSI applicant or recipient to exclude or not count income and/or resources that are specifically earmarked to pay for items related to an employment goal.

    Consider Jerry, a college freshman who has cerebral palsy and uses a wheelchair. Jerry receives $620 per month in SSDI benefits. Jerry sets aside $600 per month in an approved PASS and is able to save $18,000 in 30 months to purchase a van. This will allow Jerry to pursue a work goal as a history teacher. Since the full $620 of his monthly SSDI check is now excluded ($20 under normal rules and $600 under the PASS), Jerry now qualifies for a full $500 SSI check. After Jerry purchases the van as a college junior or senior, his state’s vocational rehabilitation agency may be able to pay the $10,000 or more needed to modify it for his use as a wheelchair user. (For a full discussion of the PASS, see our September 1996 issue of AT Advocate.)

    The SSDI, SSI, Medicare and Medicaid rules which apply to persons with disabilities who work can be powerful incentives to work. They can also be a major funding source for AT, either directly or indirectly. In future issues of IMPACT we will report on any changes that result from the proposals that are pending in Congress or proposed by SSA.

In the April 15, 1999 issue of the Federal Register, pp. 18566-18571, SSA issued a final regulation that will increase from $500 to $700 the average monthly earnings considered to be substantial gainful activity (SGA). The SGA amount was last increased from $300 to $500 effective January 1, 1990. This new regulation is effective July 1, 1999. The full text of the proposed regulation appears on our web site, www.nls.org, under "What’s New."

On January 28, 1999, Senators Jeffords, Kennedy, Moynihan and 36 co-sponsors introduced S.331, the Work Incentives Improvement Act of 1999. This proposal seeks to: expand opportunities to retain Medicaid or Medicare benefits when working; expand the availability of vocational rehabilitation (VR) services by creating a "ticket" which would allow individuals to purchase VR services outside the traditional state systems; and expand access to information about work incentives by creating a grant program to fund benefits counseling and assistance centers. It would also create a new source of funding for Protection and Advocacy programs. In its current form, the Medicaid provisions would simply provide states with authority to make Medicaid more readily availabel to persons with disabilities, it would not mandate it. The bill if passed, would also renew SSA’s authority to approve demonstration projects that would test the viability of eliminating the $500 substantial gainful activity rule for SSDI and replacing it with a benefits reduction formula that is similar to SSI’s (i.e., exempting an amount of monthly earnings and then reducing a check by $1 for every $2 earned). The full text of this bill can be obtained on the "Thomas" web site: http:///thomas.loc.gov/home/thomas.html.

Sorry for the delay! On March 12th, the Department of Education finally published regulations to conform to 1997 changes to the Individuals with Disabilities Education Act (IDEA). Reviewing and summarizing these regulations has been a daunting task, as the full test of the regulations and comments is 500 pages. Ron Hager has buried himself in those 500 pages and our newsletter on this topic should arrive about two weeks after you get this one. That newsletter will also contain a discussion of the Supreme Court’s March 3rd decision in Cedar Rapids Communitiy Sch. Dist. v. Garret F., in which the Court ordered a school district to provide a ventilator-dependent student with 1:1 school health services.

BRIDGES TO BETTER ADVOCACY HANDOUTS AVAILABLE

    Our third Bridges to Better Advocacy conference was held in Austin, Texas on March 11-13, 1999. Twenty-eight persons attended our introductory sessions on March 11th and 77 persons attended our two-day event on the 12th and 13th. Extensive handouts are available on the following topics: Medicaid; Medicare; special education; vocational rehabilitation; AT and the individual education program; Medicaid, nursing homes and AT; Medicaid and the Americans with Disabilities Act; and effective administrative advocacy. Your best bet is to find these handouts on our web page, www.nls.org. You can also get them on disk or as hard copies by calling Trish Weber at 716-847-0655, ext. 267.

    We have designed a word-searchable digest, using computer technology, to store and retrieve hearing decisions and other administrative documents. We also have indexed more than 250 documents from more than 70 pending and decided court cases. All documents are available through our AT Resource Library. Please send us your hearing decisions, briefs and other documents involving AT.

Please send information to:                              TEL: (716) 847-0650                          Handsnet: HN0627
Attn.: Diane Dustin                                             FAX: (716) 847-0227                         e-mail: nls01@sprynet.com
Neighborhood Legal Services, Inc.                  TDD: (716) 847-1322
Ellicott Square Building                                      Web Page: http://www.nls.org
295 Main Street, Rm 495
Buffalo, NY 14203

In future issues.....