Helpful resources, solutions exist
Technology has solved countless problems, but it hasn't come up with an answer to one of the world's oldest questions: How do I pay for it?
Vast technological advances in computers, augmentative communication devices, environmental control units (ECUs) and other high-tech items have enabled people with neuromuscular diseases to be more independent and more active in virtually every aspect of life.
But how do you benefit from new assistive technology (AT) developments if you can't afford them?
Although there are no easy answers, there are resources. The articles in series describe some of those resources, as well as the experiences of two consumers with neuormuscular diseases who found ways to get what they needed.
No Easy Answers
|For a list of assistive technology funding resources, click here.|
AT experts agree that, while technology is moving forward at the speed of light, the funding question is stalled.
"Sometimes getting the money for AT is a whole different ball game," says Katherine Belknap, project director for ABLEDATA. "There really is no easy answer, but we list some issues that people need to look at, and we list several different kinds of organizations by state where people can get referrals or direct [funding] assistance."
ABLEDATA, operated by the federal National Institute on Disability and Rehabilitation Research (NIDRR), provides information about AT products and rehabilitation equipment, and their sources, on its Web site and publications.
"AT is expensive because it has a relatively small market, as opposed to a mass market product," Belknap added. "Generally, the more you can sell, the cheaper you can make it, but AT isn't like that."
David Dikter, executive director of the Assistive Technology Industry Association (ATIA), which represents companies that sell AT, stated, "That's a struggle for our membership. They want people to be able to have access to their technology, but there will be no technology if they give it all away."
The reality is that many products "created and developed to enhance function, create greater independence, and create access to the workplace and learning are not generally funded by any clear means," Dikter added.
If insurance or Medicare doesn't cover the AT you need, Dikter recommends that you contact an AT manufacturer, vendor or reseller, who may know about other "pathways to funding."
"AT manufacturers/vendors are in business to help people; it's their passion," Dikter explained.
MDA provides $2,000 toward the one-time purchase of an alternative augmentative communication (AAC) device when an MDA clinic physician prescribes it.
MDA's loan closets also may have recycled and new computers or communication equipment. Borrowing a device lets you try before you buy, or assists you while you secure funding for your own device.
Medicare and some private insurance policies generally cover the costs of AAC devices. But Medicare or private insurance isn't going to pay for more than one device. Nor will Medicare reimburse for the purchase of integrated AAC devices that feature computer-access capabilities or functions like e-mail, Internet or word processing.
Medicare allows you to rent some equipment, while other equipment must be purchased. For speech-generating devices, Medicare pays 80 percent, and you're responsible for the remaining 20 percent.
States may offer Medicaid waivers to help fund AT; however, Medicaid generally requires recipients to first use other funding sources to obtain needed services. Criteria and eligibility requirements vary from state to state.
Your state's federally funded Assistive Technology Act Program is another possible source. These programs, which operate in all states, work to improve access to AT products and services.
"Your first call should be to your state AT program because they can serve as that first line of contact for people looking for AT information," said Nell Bailey, project director for RESNA's (Rehabilitation, Engineering & Assistive Technology Society of North America) Technical Assistance Project, which operates the state AT programs.
These programs are the experts at putting people in touch with AT resources and providing information about local funding sources. They also offer demonstration, loan, recycling/reuse and equipment exchange programs.
"The state AT projects have the greatest, broadest knowledge of AT products, devices and services," said John Moore, assistant director of the Texas Technology Access Program. "They know where all the funding sources are in the state and the suppliers of assistive technology."
The programs provide short-term equipment loans for people who want to try a device, and replacement devices when AT equipment is being repaired. Typically, these loans can be extended on a case-by-case basis.
Some state programs even donate new or used equipment to clients who can't afford to purchase their own, especially low-income people with disabilities.
The recycling/reutilization programs sanitize and refurbish donated equipment that's then donated or sold at an affordable price to clients. Exchange programs help match those who need used equipment with people who have equipment to donate or sell. Some states' AT programs partner with ATMatch.com, a national marketplace that matches AT donors and sellers with buyers.
Sheila Simmons, project coordinator for the Assistive Technology for Kansans Program, explained, "We are here to help people understand AT, so we provide basic access. Individuals should be able to touch equipment and learn more about it."
Often, state AT programs help people identify funding sources for which they qualify but weren't aware of. Staff will evaluate whether a person qualifies for assistance from Vocational Rehabilitation services, state grant programs, including Medicaid waivers, or private organizations.
While state AT programs may lend or give you a device, the Alternative Financing Program (AFP) may help you buy one. (For a detailed article, see "Funding Freedom," May-June 2006.)
The AFP grants low-interest loans to people with disabilities, their parents, relatives or advocates in order to finance new or used AT devices or services - including computer hardware and software, AAC devices and ECUs.
People on fixed incomes or those who don't qualify for traditional bank loans may find AFPs more receptive to their applications. 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, which operate in 33 states and U.S. territories, make allowances for poor credit, especially if it's related to a person's disability.
Joey Wallace, a public policy analyst and executive director of Virginia's Assistive Technology Loan Fund Authority (ATLFA), explained, "Even people on a fixed income can benefit, and find a way into the system and get things paid for."
Sue Castles, loan program coordinator for the Illinois TechConnect Program, noted, "Everyone's not automatically going to get a loan. But we'll work with you to learn about why a person has a certain credit history. Did they have to file for bankruptcy because of their disability and mounting medical bills? We try to find out those kinds of things before we turn them down."
To help your cause, Andrea Dimond, program director for the Washington Assistive Technology Foundation (WATF), recommends that loan applicants keep detailed financial records, be aware of their finances and provide a detailed budget.
Jason Luciano, director of the Massachusetts AT Loan Program, also noted that a person's credit score improves when he or she makes loan payments on time. Luciano worked with a young man with a disability who applied for a loan with a 0 credit rating. He was granted a loan and made payments on time. Six months later when he applied for a vehicle loan, his credit score had gone up to 700.
Jackie Wilks-Weathers, program director for Georgia's Credit-Able, said the program has given people small loans to help establish their credit, serving as "a track record for a future loan."
Wilks-Weathers added that the AFP evaluates 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."
"We're trying to make sure that technology gets into the hands of people who need it, and that they are able to access that through affordable financing," she said.
If you receive partial AT funding from one source, such as a Medicaid waiver or a private grant, a small, low-interest AFP loan can help close the gap and complete your purchase.
For example, the Washington AT Foundation offers micro loans up to $1,000 to use in conjunction with other forms of assistance.
In addition to its guaranteed loan program, the Pennsylvania Assistive Technology Foundation (PATF) also offers a minigrant/miniloan option. Low-income borrowers may qualify for a 0 percent interest loan under $1,000 and up to a 50 percent grant. The miniloan has a three-year repayment term at $20 a month.
"We want to help people get the AT they need and improve their creditworthiness," said PATF Executive Director Susan Tachau.
Like other AFPs, Tachau explained, PATF also helps people locate other funding sources, and it will explore all possible funding options before giving a minigrant.
Your local centers for independent living (CILs) have valuable information about AT funding sources in your area. Independent living specialists often work with people with disabilities to secure split funding from more than one source, ensuring that you have a better chance of getting the AT you need.
"We utilize a lot of creative funding sources," said Von Elison, executive director of the Central Washington Disability Resources Center for Independent Living. "There're a lot of creative methods and so many different ways of funding AT, and with patience, it can be done."
Many CILs offer short-term loans and no-cost recycled equipment. They also have equipment exchange programs, which offer items at prices lower than the cost of new items and make backup devices affordable.
"CILs play a tremendous role," said Nanci Lederman, Recycled Equipment Exchange Program (REEP) coordinator for the Three Rivers Center for Independent Living in Pittsburgh. "That's part of our mission."
If you're employed, check with your state Department of Vocational Rehabilitation to determine what types of AT devices and services qualify for coverage in order to maintain employment.
For veterans, the U.S. Department of Veterans Affairs may provide funding for AT.
And, if you're receiving SSI benefits, the Social Security Administration allows recipients to set aside SSI income to be used toward an approved Plan for Achieving Self-Support (PASS) without jeopardizing benefits. A PASS plan can include saving funds to purchase AT devices or services to help reach an occupational or educational goal.
"Lack of funding remains the greatest barrier to consumer access to AT," public policy analyst Joey Wallace explained. "With all the increased availability of information, device demonstration centers and equipment evaluation opportunities, people with disabilities continue to struggle to find available financial resources."
Notably, inconsistencies among the federal government, states and insurance companies make the financial maze dizzying.
To avoid getting lost, be proactive, creative and resourceful. It also pays to keep detailed notes and records. If you're denied by one funding agency, find out why, and look for another.
If there's a device you need, contact its manufacturers and vendors because they generally have funding departments that can help locate other funding sources, or possibly work out a lease or rental plan. Some manufacturers may even loan AT devices.
Private organizations and AT manufacturers may be able to put you in contact with families who've been successful at locating funding and purchasing similar equipment.
You may have to take the long way through the maze, but do your research and ask questions. They're important keys to gaining access to the AT that you need.