Playing the Money Game: Funding Challenges and Options
by Alyssa Quintero

The money game often is riddled with bureaucratic red tape and frustration. However, solutions exist that can help you find the funds you need to win the game.

The following articles look at different financial strategies for getting adaptive equipment, home modifications, accessible vehicles, college tuition, medications and more.

In every case, it’s necessary to investigate your options, be proactive and combine multiple funding sources to close the funding gap.

Don’t forget that MDA provides financial assistance with the purchase and repairs of wheelchairs, leg braces and communication devices. In addition, several local, state and national programs can help you locate resources.

To start, your local Centers for Independent Living (CILs) have valuable information about funding sources in your area. Independent living specialists and counselors often work with people with disabilities to determine their eligibility for various state and local programs. Even if you think you don’t qualify, it’s worth investigating.

And, State Assistive Technology Act Programs — available in all states — also can provide information and referral services for AT funding in your area (see “Assistive Technology Funding Challenge,” January-February 2007).

Notably, inconsistencies between federal and state government programs make the money game even more complicated. To be on top of your game, start by keeping detailed notes and records.

Keep a log of all research, including organizations called, Internet sites visited and applications filed. Be sure to jot down dates of phone calls and names of people with whom you’ve spoken. If you’ve corresponded with funding agencies via e-mail, keep a file of your sent e-mails with the subsequent replies.

As you’ll see in the following articles, when it comes to playing the money game, it pays to be creative, proactive and resourceful, so you can play to win.

Getting and keeping a job

To help you pursue employment goals, your state Department of Vocational Rehabilitation (VR) may offer funding to purchase adaptive equipment and services.

VR agencies often have limited budgets, as is the challenge with many federal and state programs. But, it never hurts to contact your local agency to see if you qualify for assistance. To see what’s available in your state, visit www.jan.wvu.edu/SBSES/VOCREHAB.HTM.

For example, Dan Dorszynski of Honolulu is self-employed and operates an Internet services company called Wet Sand. Dorszynski, who has limb-girdle muscular dystrophy and has used a wheelchair full time for the last two years, spends about 50 to 60 hours on the job each week.

Dorszynski’s insurance company denied his request for a power wheelchair with a vertical lift. But because he was having trouble getting to business meetings, he knew VR would be able to help. When he was offered a price-reduced demonstration wheelchair, VR and MDA each contributed $2,000.

“Since losing my mobility would have directly affected my ability to work, I qualified for VR services,” Dorszynski, 33, explained. “They determined the investment in assisting me would result in future earnings and taxes that would end up paying for the investment itself, and they were right.”

After Dorszynski received the power wheelchair, however, he had no means of transporting it, especially in a way that would allow him the flexibility to travel to meetings and other work-related appointments.

As a result, VR assisted with vehicle modification costs and the shipping costs from Florida to Dorszynski’s home in Hawaii. He purchased a Nissan Titan pickup truck for $25,000, and VR picked up the bill for $35,000 in modifications (lift, body modifications, assisted steering and brakes).

The truck also was modified so Dorszynski can use a remote control to open the doors and operate the lift. To drive, he relies on reduced-effort (assisted) steering and brakes with backup systems, and hand controls.

“I would encourage young people with neuromuscular disorders to focus on education as much as possible because Voc Rehab is definitely the way to go if you need financial assistance toward becoming or staying employed,” Dorszynski said.

In Clearwater, Fla., Christopher Rhoades, who has Duchenne muscular dystrophy, has been a VR client since graduating high school in June 2007.

Rhoades, 19, has worked with his caseworker to create an educational and employment plan, and he took some college courses last year. VR helped him get a part-time job at a local Target, where he worked in the electronics department for the summer.

For transportation to and from school and work, VR has provided Rhoades with vouchers for the local wheelchair transport system, which provides door-to-door service.

Rhoades’ well-established relationship with VR has had several benefits. For example, his family is in the process of moving to a smaller home, and VR sent a rehab engineer to evaluate areas of the home that need to be modified.

The engineer evaluated Rhoades’ bathroom, bedroom and two entrances to the house, and recommended a roll-under sink/vanity, roll-in shower, widening of bathroom and bedroom doors, and ramps for the front door and door leading in from the garage. Once approved, VR will pay for the modifications.

“We had never qualified for any funding programs before because we made too much money,” explained Tracie Wiechmann, Rhoades’ mom. “There’s no easy funding, and you probably won’t find it in one place. You have to be creative, and explore all of the potential opportunities. It takes time, research and a lot of work.”

Waivers provide AT funding flexibility

Home and Community Based Services (HCBS) waivers are meant to help Medicaid recipients with physical disabilities remain in their homes. In many cases, HCBS waivers are able to offer more funding flexibility than standard Medicaid.

States aren’t required to implement waiver programs, but every state has at least one.

HCBS waivers increasingly are used as a funding source for assistive technology (AT), reports the National Assistive Technology Advocacy Project. The reason: They’re tailored to help people fund costly equipment that wouldn’t be covered under the traditional Medicaid program, or that would be difficult to get approved without an appeal.

The AT Advocacy Project (www.nls.org/natmain.htm) says individuals must meet the usual Medicaid income and resource limits; however, states have the right to waive the standard requirement of counting the income and resources of spouses or parents.

HCBS waivers may provide for a wider range of services than standard Medicaid, and some states have used the “other services” category to approve funding for home and vehicle modifications. While there’s no guarantee you’ll get all AT or services covered, know that your state’s HCBS waivers are a good place to check.

For example:

• The Illinois HCBS waiver for people with physical disabilities also includes ventilator users who’d otherwise be institutionalized in a nursing facility. Among the services the waiver covers: environmental accessibility adaptations (i.e., home modifications), respite care, personal care, and specialized medical equipment and supplies. (See www.hfs.illinois.gov/hcbswaivers/disabilities.html)


• Michigan’s MI Choice Waiver Program specifically states that it covers “equipment not covered under the Medicaid state plan.” (See www.michigan.gov/mdch and enter into the search box: “Choices for older or disabled persons who may need help caring for themselves”)


• In Texas, the Department of Aging and Disability Services offers the STAR+PLUS waiver for people with disabilities and the elderly. It has provided coverage for such adaptive aids as: braces; wheelchair and ceiling track lifts; mobility aids and portable ramps; communication aids; environmental control units; home and vehicle modifications; and daily living adaptive aids like electric self-feeders and adapted kitchen appliances. (See www.dads.state.tx.us/starplus)

However, Medicaid waivers also pose some challenges. Medicaid funding is limited, so programs may accommodate a smaller number of applicants. You may have to go on a waiting list, with no guarantee that your number will come up before funds expire.

For example, Jason Abramowitz of Columbia, Md., has Duchenne muscular dystrophy and receives Supplemental Security Income (SSI) and Medicaid. Abramowitz, 23, has been on the waiting list for Maryland’s HCBS waiver for four years.

“It can take time,” said Adele Abramowitz, Jason’s mom. “Maryland, like a lot of other states, is in a financial crunch, so there isn’t a whole lot of extra money floating around.”

Adele recommends people work closely with their case manager to search for additional funding sources, agencies for caregiving, etc., while they’re awaiting approval.

“You have to keep your eye on them, and keep on top of them.”

Because Medicaid varies from state to state, the same goes for its waivers. To learn more about what’s available in your area, visit the Centers for Medicare & Medicaid Services (CMS) site at www.cms.hhs.gov/MedicaidStWaivProgDemoPGI/08_WavMap.asp, and click on your state.

Or, look for your state’s Department of Health & Human Services and Division of Rehabilitation Services in your phone book.

Furthermore, the HCBS Clearinghouse for the Community Living Exchange Collaborative provides a site dedicated to people with disabilities and older adults. Browse more than 1,000 HCBS resources in different categories, and search by state for disability-related services. For more information, visit www.hcbs.org, or call (617) 552-3484.

Check out developmental disabilities funds

For young people with neuromuscular diseases, one unexplored option for receiving assistance with adaptive equipment is right where you live — your state’s developmental disabilities agency.

At the national level, the Administration on Developmental Disabilities (ADD) is overseen by the Department of Health and Human Services’ Administration for Children and Families. The national ADD office doesn’t provide direct funding to people with disabilities; however, it provides funding, monitoring and policy guidance to its state programs nationwide.

ADD defines developmental disabilities as “physical or mental impairments that begin before age 22, and alter or substantially inhibit a person’s capacity” to perform daily living activities, including: self-care (dress, bathe, eat, etc.); capacity for independent living; learning and speaking; mobility; self-direction; and earning/managing income.

ADD programs exist, in some form or another, in each state and U.S. territory –– but as with all state programs, ADD services vary from state to state. In addition, some state offices’ interpretation of “developmental disabilities” may be narrower than the federal government’s definition.

Jason Abramowitz, 23, has Duchenne muscular dystrophy and has been a client of Maryland’s Developmental Disabilities Administration (DDA) for 10 years. Through the agency, Abramowitz and his family have received assistance with home modifications and personal care aides.

“A lot of parents have been told that their child doesn’t qualify for this type of funding because their child isn’t mentally disabled, but that’s incorrect,” said Adele Abramowitz, Jason’s mom. “The federal government clearly defines it as physical and mental disabilities.

“Unfortunately, so many people go to these agencies, and they’re told they don’t qualify, so they walk away because the agencies are supposed to know better.”

Jason, who’s been on the Medicaid HCBS waiver’s waiting list for four years, qualified for DDA’s New Directions waiver in May 2007. That waiver requires recipients to have a budget set up with DDA, and it allows recipients to direct their own services, meaning they can hire and fire personal care aides.

Recipients manage their budgets in conjunction with a fiscal management service, which pays out the money for bills, handles tax paperwork and provides monthly budget statements.

Jason has a $40,000 budget, and he hired his mom to be his personal caregiver. Now, she’s getting paid $30,000 a year to do “something I’ve been doing for the last 22 years.”

The rest of the money goes toward mileage reimbursement expenses and entertainment costs.

DDA’s assistance with home modifications has made a huge difference. Prior to becoming a DDA client, Adele and her family started a do-it-yourself accessible bathroom project for Jason because they couldn’t find the $20,000 needed to pay for a professional job.

The project progressed slowly because most of the work was done on weekends, causing a big problem — Jason didn’t have a bathroom for nine months.

“I wasn’t able to shower him, he had to use a commode chair in his bedroom, we had to give him sponge baths in bed, and it was difficult to wash his hair,” Adele explained. “When we were connected with DDA, we were put into crisis resolution. We were three-fourths of the way from finishing, and we got it finished with DDA’s help.”

DDA has provided the Abramowitz family with more than $15,000 in home modifications and adaptive equipment over a 10-year span.

“We’ve gotten a lot, but we don’t want to get more than Jason absolutely needs,” Adele emphasized. “Getting your foot in the door with one funding program [like DDA] often leads to the discovery of other programs [like the New Horizons waiver].”

To find out more about your state’s ADD programs, call the national office at (202) 690-6590, or visit www.acf.hhs.gov/programs/add. The site provides a link to the State Councils on Developmental Disabilities, where you can click on your state to locate the developmental disabilities agency in your area.

Rx SOS

If you’re having trouble paying Medicare costs, especially prescription drug insurance and copays, contact your local State Health Insurance Assistance Program (SHIP) to determine if you qualify for state or federal assistance.

For example, low-income Medicare recipients can apply for Extra Help, a federal program that assists people with their Medicare Part D costs. The program offers no or low premiums and deductibles for prescription drug coverage, as well as low copayments (as low as $1.05 and no more than 15 percent of the drug’s cost).

Those receiving Medicaid, Supplemental Security Income (SSI) or who are enrolled in a Medicare Savings Plan (MSP) automatically qualify for Extra Help. The level of Extra Help is based on income and assets (income limits based on federal poverty level guidelines).

Under the Extra Help program, in 2008 a person with Medicare, a monthly income below $1,170 ($1,575 for couples) and assets less than $7,790 ($12,440 for couples) would have a zero premium and deductible, and a small copay for each drug ($2.25 for generic and $5.60 for brand name).

Also, the copay amount can be lower if the beneficiary also receives Medicaid. For example, a person with monthly income below $867 ($1,167 couples) and assets under state limits would pay $1.05 for generic and $3.10 for brand name drugs.

If you don’t automatically qualify, an application can be obtained at the local Social Security Administration office or online at www.ssa.gov/prescriptionhelp. Applications can be done online, by phone or in person at a local SSA office. For help in applying for Extra Help or a Medicare Savings Program, contact the local Department of Social Services, or call the Medicare Rights Center hotline at (800) 333-4114 to speak with a counselor.

The Medicare Rights Center reports that the application process may be easier through SSA than the state Medicaid office. The online SSA application allows applicants to self-report income and assets, while the state Medicaid office may require proof up front.

Research whether you qualify for Medicare’s Extra Help at the Benefits-CheckUp site (www.benefitscheckup.org; click on the “Medicare Rx Extra Help” icon). The free service of the National Council on Aging also includes updated information on state pharmacy assistance programs, as well as other relevant state and federal programs.

In addition, many states offer pharmaceutical assistance programs to help defray prescription drug costs. To learn more about the eligibility requirements and what’s available in your state, visit www.medicarerights.org/rxframeset.html.

Patient Assistance Programs (PAPs) are operated by pharmaceutical manufacturers and companies, providing free or low-cost drugs to people who meet stringent low-income guidelines. Each program has different requirements and application procedures. The Medicare Web site (www.medicare.gov/pap/index.asp) offers a searchable database; select the drug(s) you’re taking, and it will list any corresponding PAPs.

Some other sources that link people to prescription assistance programs include:

• Partnership for Prescription Assistance (888-477-2669, www.pparx.org) — a free service that helps match people who can’t afford drug costs to programs that provide no- or low-cost medications.


• RxAssist (877-844-8442, www.rxassist.org) — click on the link for patients to learn more about drug discount cards, and register to explore a database by drug name or drug company.


• RxHope (908-850-8004, www.rxhope.com) — find out if you qualify for a PAP or other federal, state and charitable prescription drug programs, and access government- and corporate-sponsored PAPs for more than 1,000 medications.


• NeedyMeds.com (www.needymeds.com) — search links to PAPs, and search for state and state-sponsored programs.

For additional funding resources, check out InfoQuest.