Funding challenges and options
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.
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 http://www.jan.wvu.edu/cgi-win/TypeQuery.exe?902.
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.”
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.
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/home/medicaid.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.
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.
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.medicareinteractive.org/uploadedDocuments/mi_extra/spap_chart.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:
For additional funding resources, check out InfoQuest.
It takes money to go to college. In addition to employment-related assistance, state Department of Vocational Rehabilitation (VR) agencies may offer tuition waivers that can be used at state colleges and often cover other student fees and book costs.
Like many families affected by neuromuscular disorders, Jamie Coton and her son, Ryan, who has Duchenne muscular dystrophy, have had to combine resources in order to get adequate funding for equipment and other services.
Ryan, 19, attends Hillsboro Community College in Tampa, Fla., on a four-year scholarship that pays for tuition. However, as a single parent, Jamie admits it’s difficult to make ends meet. Ryan’s been a VR client since his junior year in high school, so VR has helped in many ways. For instance, as long as Ryan maintains his good grades, VR will continue to pay for his books.
After a local fundraiser helped Coton purchase a new Dodge Grand Caravan, Coton still needed help paying for the additional $20,000 in modifications.
“Imagine having to dish out that kind of money for just the modifications, not even including the van,” she said.
After an extensive Internet search for funding, Jamie discovered VR often helps with vehicle modifications and contacted Ryan’s caseworker. Because she needed reliable transportation to get Ryan to school and other appointments, VR again came to the rescue.
“When trying to get any assistance, you have to dig around,” Jamie Coton emphasized. “It’s not like you can open the phonebook or pick up a book to find help staring back at you. Sometimes you have to be creative.”
Besides VR, some community colleges offer tuition waivers to individuals receiving Supplemental Security Income (SSI) through the Social Security Administration. To see if you qualify, contact the college bursar’s office or financial aid office. Typically, colleges require students to complete an annual SSI verification form.
For example, Jason Abramowitz of Columbia, Md., who’s also a VR client, receives an SSI tuition waiver, making it possible for him to attend Howard Community College at virtually no cost.
VR pays Abramowitz’s fees that aren’t covered by the SSI tuition waiver; provides a stipend for books and other equipment; and provides funding for a school aide.
The amount of VR funding generally is based on credit hours, says Jason’s mom, Adele Abramowitz. However, Jason, 23, is unable to carry a full load, or 12 credits, for medical reasons. Adele submitted a letter from his physician supporting a request for fewer credits, and VR currently allows Jason to take six credits per semester and still receive VR services, as well as the SSI tuition waiver.
For more information, contact your local SSA office at (800) 772-1213, or visit https://secure.ssa.gov/apps6z/FOLO/fo001.jsp
If you receive partial funding from one source, such as a Medicaid waiver or a private grant, low-interest loans with favorable terms can help close the gap and complete your purchase.
Alternative Financing Programs (AFP), available in 33 states and U.S. territories, grant low-interest loans to people with disabilities, their parents, relatives or advocates in order to purchase assistive technology or services. AFPs can help lessen the burden of funding big-ticket items, including accessible vehicles, home modifications, computer hardware and software, speech communication devices, etc.
People on fixed incomes who don’t qualify for traditional bank loans may find AFPs more receptive to their applications. (For a detailed article, see “Funding Freedom,” May-June 2006.)
For example, many programs work with recipients of Supplemental Security Income (SSI) or Social Security Disability Insurance (SSDI). Understandably, the loans are smaller so the borrowers will be able to afford the monthly payments. AFPs also make allowances for poor or no credit, especially if it’s related to a person’s disability.
Jackie Wilks-Weathers, executive director for Georgia’s Credit-Able program, said they evaluate a person’s complete financial situation because “the idea is to provide them with a tool to live more independently, not put them into a worse financial situation.”
In addition, AFP loans in many states can be used to refinance loans for home modifications and accessible vehicles that were taken out at higher interest rates through other financing agencies.
Kathy Adams, an AT specialist and project contact for Maine’s AFP, said that people can request a longer repayment term to make the payments even more affordable. All AFPs may not offer refinancing, so contact the program in your area by visiting RESNA’s database at http://184.108.40.206/~resnaorg/AFTAP/state/RESNA.html, or call (703) 524-6686.
“It’s becoming more common because it’s common sense,” Adams added. “You refinance to bring your payments down and to increase your own cash flow. We don’t want to flip the family upside down.”
“Access loans” are available to people with disabilities to help finance all forms of assistive technology (AT), specifically adapted vehicles and equipment, and home modification projects like ramps, lifts, door widening, etc.
However, access loans aren’t offered by every bank.
For accessible vehicles, Burhill Financial Services (based in Dayton, Ohio) offers mobility financing packages customized to include the van, conversion, sales tax and service contract — generally with little or no down payment. Burhill also offers low-interest loans and leases, as well as long-term financing for consumers looking for a low monthly payment.
Burhill is a credit service organization that partners with mobility dealers nationwide. It evaluates clients’ applications for financing, and based on the information, partners clients with various financial lending institutions across the country.
Digital Credit Union, headquartered in Marlborough, Mass., offers Access Loans to help finance any product, device or building modification, ranging from power wheelchairs and adaptive computer equipment to home modifications. The loans range from $1,500 to $25,000 for up to 72 months, and no down payment is required.
DCU also offers Mobility Vehicle Loans for vehicles and adaptive equipment, allowing you to borrow $5,000 to $100,000 with a maximum 120-month repayment term (term based on loan amount). Learn more at www.dcu.org/loans_visa/index.html or (800) 328-8797.
To apply for a loan, you must be a DCU member. If you’re a member of an organization served by DCU, you’re also eligible to join. For example, dues-paying members of the American Association of People with Disabilities (AAPD) can apply for DCU membership.
Bank of America’s Access Loans offer flexible terms for people with disabilities who need to finance adapted vehicles and home improvements. The loan’s main benefit is that it provides longer repayment periods, which translates into lower monthly payments. Be aware, however, that longer repayment periods also can mean that you’ll pay more interest in the long run.
Keep in mind that credit history, debt/income ratio, loan type and loan term are considered in loan approval and interest rate decisions. To learn more, go to www.bankofamerica.com, and click on “Access Loans,” visit a local B of A banking center, or call (888) 457-2543.