It’s perhaps the most common problem we all encounter: our children absolutely need items—often to survive—that are not covered by health insurance. Frequently, insurance considers items like bath chairs, lifts, or even diapers as “items of convenience.” Clearly they have never experienced life with a child who needs these items, because bathing, getting out of bed, and staying hygienic are certainly necessary! In other cases, items that are lifesaving, including end-tidal monitors, pulse oximeters, enteral formula, and even oxygen are denied. Standers or walkers may be deemed unnecessary, and even urinary catheters may be denied. Home and vehicle modifications are considered luxuries.
Many of these items are necessary, no matter what insurance says. While appealing the denial is always a great first step, sometimes policies simply will not cover what you need. In this instance, you need to find alternate funding in order to obtain an item. In this article, I will provide a wide variety of alternate funding sources that may help you to obtain specific needed supplies or equipment.
Maximize Your Federal Benefits
Strangely enough, Medicaid and other public benefits are much more likely to cover medically necessary items than insurance, especially for children. Programs such as WIC, Medicaid, and Medicaid Waivers may pay for items insurance routinely denies.
WIC: WIC is a federal program for pregnant women, infants, and young children. Most people think of WIC as a provider of milk and vegetables, but they also will provide medically prescribed enteral and oral formulas for children up to the age of 5. Beginning 7/2014, families who earn less than 185% of the Federal Poverty Line ($44,123 for a family of four in 2014) qualify for WIC. Children with Medicaid often are considered presumptively eligible for WIC.
Medicaid: Medicaid provides primary or supplemental health coverage for low-income children throughout the United States. Medicaid may cover many items that are not covered by insurance because of a regulation called EPSDT that requires Medicaid to pay for all medically necessary items for children financially eligible for Medicaid or in Medicaid waivers. Medicaid income requirements vary by state, but all children under 100% of the Federal Poverty Line ($23,850 for a family of four in 2014) are eligible. See this chart to determine the income eligibility level in your state.
Some states also expand Medicaid to middle income families through separate Children’s Insurance Programs. These programs are permitted to limit benefits, often comparable to standard insurance policies, though some states provide full coverage. The package of benefits varies from state to state. To find out if your state has this type of program and the income limits, see this chart.
Medicaid covers enteral formulas, diapers, medical supplies such as catheters, equipment rental and purchase for all durable medical equipment, including ventilators, feeding pumps, oxygen, and similar items, as well as in-home lifts, wheelchairs, standers, hospital beds, and similar items. While states may place restrictions on items, if a doctor determines an item to be medically necessary, under EPSDT the state must pay for it.
Medicaid Waivers: Each state is offered the opportunity to extend Medicaid to certain groups of children with disabilities through a variety of federal and state programs. These include 1915(c) Home and Community Based Waivers, TEFRA or Katie Beckett Waivers, 1115 Demonstration Waivers, and other state-based programs. All of these programs grant Medicaid coverage to children with disabilities who do not qualify due to family income or need additional services. 1915(c) and TEFRA/Katie Beckett Waivers are required to provide full EPSDT benefits to children. 1115 Waivers and state-based programs may have limited benefit packages. To see the current waivers available in your state, visit http://www.kidswaivers.org/.
Certain types of Medicaid Waivers, including all 1915(c) Waivers and some 1115 Waivers and state-based programs, also provide additional benefits not covered by Medicaid. These typically include Specialized Medical Equipment and Supplies, and Environmental Modifications. The first category covers maintenance and repair of medical equipment, as well as specialized devices, such as end-tidal monitors, certain augmentative communication devices, special needs car seats, and similar traditionally uncovered items. The second category, Environmental Modifications, will cover modification of a van for wheelchair access, home entry modifications such as a ramp or lift, and indoor modifications, such as a roll-in shower, widened doorways, and even electrical upgrades for medical equipment. States often restrict the amount of money that can be spent per year or per person.
Borrowed and Second-Hand Items
When it is impossible to find a payer for a specific item, sometimes the item can be borrowed or obtained second-hand for free or cheaply.
State-Run Lending Libraries or Loan Programs: Each state is required to run a statewide assistive technology program, and most of these programs include lending libraries or loan programs. Items available for loan vary widely by state, but typically include switches, communication devices, and may also include positioning and mobility devices. Visit the Association of Assistive Technology Act Programs for a list of programs in your area.
Schools: Schools are required to provide appropriate assistive technology devices to allow students to access the curriculum. While many of these devices may only be used during the school day, certain items may be brought home and used continuously. These typically include communication devices, switches, and smaller positioning or mobility devices.
Lending Closets: Most areas have one or more special needs lending closets that loan used durable medical equipment, including wheelchairs, standers, toileting and bathing equipment, and similar devices on an as-needed basis. In same cases, items may be provided on a permanent basis, while most programs lend items until they are outgrown or no longer needed. Common places to find Lending Closets include through UCP, local hospitals, Easter Seals, Muscular Dystrophy Association, and local nonprofits. The best way to find these programs is to Google your location with the phrases “special needs equipment loan” or “used medical equipment.”
Toy Lending: Toy lending libraries are popping up all over the country. Some of these are particularly geared toward children with special needs, such as the Lekotek programs that are currently available in eight states. These programs typically lend toys, assistive devices, developmental devices, computer programs, and some mobility equipment. Many hospitals also have adaptive toy lending programs. To find programs in your area, Google your location and “special needs toy lending” or “adaptive toy lending.”
Nonprofit Supply and Equipment Exchanges: Many foundations now facilitate the exchange of equipment and supplies focused on specific needs, such as enteral formula or IV supplies. A good list of programs is available at Feeding Tube Awareness.
Facebook Supply and Equipment Exchanges: Facebook is full of supply and exchange boards. Some are tightly controlled and reasonably safe; others are full of predatory individuals who take your money and fail to send you supplies. Look for groups that only charge the cost of shipping, as these tend to be more safe, comply with legal requirements regarding reselling supplies, and are of course more economical. A good list of programs is available at Feeding Tube Awareness.
Craigslist, Freecycle, and Other Classified Ads: Surprisingly enough, many people list durable medical equipment and supplies on local classified ad sites. It is always worth a try to check local listings for the items you need. Always be cautious about personal safety and scams when using classified ads.
Ebay: Ebay is another source for inexpensive, used medical equipment. In many cases, the equipment used by hospitals or clinics may be provided to a used medical equipment dealer and then sold on Ebay. Private individuals also sell items at reduced prices. Check periodically, as new items may be listed daily. You can set up a search that will also notify you if an item you are looking for is listed.
Person to Person: Most parents of children with special needs know a lot of other similar parents. Use your contacts to network, because you might just find someone has the exact item you need sitting in the basement!
If you are unable to obtain a secondary funding source or find items secondhand, you might consider other strategies, such as obtaining a low-interest loan, gaining help from state and local government programs, fundraising, or contacting a charity for assistance.
Low-interest Loans: Certain uncovered needs, such as home or vehicle modifications, can be very challenging to cover. You may be eligible for a very low-interest home or vehicle loan through your state, and in some cases, through HUD, Housing and Urban Development. More information is available on https://www.disability.gov/, or you can Google your state and the terms “disability home loan” or “disability vehicle loan.”
State and Local Programs: Each state and city has local programs that may be exceptionally helpful. For example, in my city, the Mayor’s Office for People with Disabilities provides home modifications up to $10,000 for individuals of most incomes. Most of these programs focus on larger needs, such as home modifications, but some also cover smaller needs as well.
Fundraising: Many families find they simply need to raise money in order to purchase certain items. These days, programs such as GiveForward, GoFundMe, and YouCaring make fundraising simple. Other options include holding an online auction, setting up a garage sale, fundraising products, and many other options. For durable medical equipment, you can set up fundraising directly through Adaptive Mall’s Kiddie Pool program.
Charity Assistance: Charities can be extremely helpful in obtaining specific supplies or equipment that is not covered. A wide range of charities, from civic organizations to religious groups, private foundations, and disease-specific groups may be able to help.
The list of charities that are willing to help is too enormous to list, but here are a few that focus specifically on medical needs that may be helpful: