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Funding to make the wheels turn round.


There is only one established rule to get funding for adaptive equipment that can assist a child -- never give up.

Wheelchairs and necessary related equipment are not cheap. Depending on the seating system and any extra devices necessary to meet a child's needs, the cost of a powered wheelchair and a seating system can range from $4,500 to as much as $30,000. Even the cost of a "no frills" manual chair and an "off-the-shelf" seating system is likely to begin at $900. In addition to the parents' own resources, wheelchairs and seating systems can be funded by: 1) private health insurance; 2) governmental programs for those qualifying for public assistance; 3) private, non-profit organizations and service club donations; or 4) by some combination.

Financing or leasing wheelchairs are concepts whose time has not quite come, although individual dealers may offer special payment plans. Financing and leasing are problems because: 1) A loan would typically be collateralized by the chair itself (like an automobile loan), and no lender wants to have to repossess a chair; and 2) Information does not exist for a lending officer to assign a collateral value to a wheelchair.

Used equipment is another option. Some local parents' groups have formed clearinghouses for information on used equipment. These groups are usually known to local organizations, therapists and dealers.


Parents should work with the medical equipment dealer on all efforts to secure funds. Since the dealer must have a great deal of expertise with various kinds of claims to different insurance companies and governmental programs in order to stay in business, he or she is well-equipped to advise parents, as well as clinical professionals, and help with the paperwork.

Parents need to ask the dealer how they can cooperate to facilitate the process. Every dealership has its own way of doing business, with no one correct approach -- except that it must agree with the parents. Parents need to carefully monitor what the dealer is doing, and they must share with the dealer any information they have gathered. This is critical because tactics and strategies must coincide so everyone speaks with one voice to the complicated patchwork of funding entities. Any apparent cross-purposes or contradictory statements made to funding sources, who naturally guard against abuses of their money, can result in a dead end. If parents have a fundamental disagreement with their dealer which cannot be resolved, they should find someone else.


Find out exactly what the insurance company (or companies, in the now-typical case of two working parents) covers, even if it is nothing -- at least you know where your starting point is. There are many kinds of health insurance plans; each with its own set of exclusions and pre-existing conditions to worry about. Today, many parents participate in "managed health care" programs -- Health Maintenance Organizations (HMOs) and Preferred Provider Organizations (PPOs). Typically, HMOs and PPOs are less expensive but they then attempt to control costs by emphasizing traditional healthcare and staying away from experimental procedures and new types of adaptive equipment.

Health insurance usually covers products that are medically necessary as differentiated from therapeutically beneficial; this can complicate a claim for a wheelchair. This distinction, which stems from insurance companies' funding of "treatment" for "disease," is a peculiar one in relation to the needs of children. Until this kind of reimbursement restriction is modernized to meet the needs of children (and adults) with disabilities (rather than illnesses), professionals need to write their prescriptions very carefully. For example, an electronic device that allows a user to operate a computer with a powered wheelchair's joystick will probably be denied on the grounds that it is not medically necessary, even though most people will agree that a child's ability to operate a computer will be absolutely essential for education and/or future employment. Or, a claim for a child who needs customized positioning equipment may be the first time the insurance company has ever had such a claim -- so almost automatically it gets rejected.


Since Medicaid or state Crippled Children's Services reimbursement regulations can vary considerably from state to state, parents need to review the latest information by contacting the local office of the agency. Medicaid reimbursement procedures are likely to be similar to and as complicated as health insurance programs. Again, the prescription letter (report) is critical. Sometimes funding for equipment related to education rather than health needs can be funded via local special education funding.


The most essential "weapon" in the funding arsenal is the letter of justification from the child's physician and clinical team. The letter should explain in great detail how the prescribed equipment meets the needs of the child. The letter should describe both the details of the child's condition as well as how the specific equipment will help. Pictures of the child can be essential to vividly document the child's need for the specifically prescribed equipment. Finally, because of the "medically necessary" issue, it is essential for the letter/report to be signed by a physician.

To address possible arguments from cautious insurance carriers, the letter must also justify why other less expensive equipment cannot perform the job as well as the prescribed equipment. This is especially important if the system prescribed is new or relatively unknown (remember that much adaptive equipment was not around five or ten years ago). Even something as basic as why a pediatric chair is needed must be documented. Many insurance company claims examiners are not likely to know all the necessities and advantages of the new adaptive equipment designed specifically for children. For example, they may ask why an off-the-shelf modular seating system used in the least expensive wheelchair won't do.


A denial of a claim does not mean the company or program will not ultimately pay. Sometimes there is not enough information to approve the claim and "no" means "tell us more." Every reimbursement program (private insurance or state agency) has an appeal review process that allows objections to reimbursement to be challenged. Dealers know these procedures and parents should be prepared to provide whatever additional information may be needed.

The growth of "case management" is helping to resolve these problems. Beginning with worker's compensation and long-term disability claims, case management has taken hold, particularly in HMOs, and has begun to spread to more traditional insurance plans as well. Case managers are coordinators, typically registered nurses or other health professionals employed by the insurance company or the HMO, who seek the most cost-effective care for the insured individual. Due to their backgrounds as patient advocates, many of these professionals have displayed great willingness to consider new approaches and equipment if they can be shown to be cost-effective in meeting a child's short-term and long term needs.

Insurance companies and government agencies in the East are often more willing to pay than those west of the Mississippi River because Easterners have had a much longer history of funding adaptive equipment for people with long-term disabilities.

Accordingly, documenting the experiences of children with similar needs in more receptive states can be useful ammunition in getting funding in less receptive areas.


There are also non-insurance and nongovernmental sources of funding for children. For example, The Order of Elks is actively involved with the United Cerebral Palsy Association in providing financial assistance. The Muscular Dystrophy Association, the Spina Bifida Association of America and National Easter Seals Society are some of the other organizations in the disability field involved in assisting children with physical disabilities (see Funding Resources). The Telephone Pioneers of America, an organization of retired telecommunications workers, provides both financial assistance and technical expertise from their members' electronics background.

Some local groups that are not specifically related to services for people with disabilities may be willing to help. Social agencies, such as the local United Fund agency or Family Service Association agency, or service clubs, may be able to help parents uncover a source of funds. Sometimes, local charitable foundations are open to requests for funds. Such funds may only be available under special conditions or at certain times in a budget year.

Or parents may want to approach a community leader such as a clergyperson or political official, who may have access to individuals or companies that disburse funds for good causes but do not actively seek applications for money.

In some communities, clinical teams have established programs which attempt to match youngsters in need with local business and charitable groups.


The basic message is never give up. It is unfortunate, but true, that parents may have to assert themselves to see to it that they get the financial help that is required. Fortunately, there are people and organizations ready to help.


Benevolent Protective Order of Elks P.O. Box 159 Winston, N.C. 27986 (919) 358-7661 Several local chapters are quite active in providing funding to children with disabilities. Contact the national organization for the most actively involved chapter in your area.

Muscular Dystrophy Association 810 Seventh Ave. New York, N.Y. 10019 (212) 586-0808 This organization provides assistance to children and youth with neuromuscular diseases locally through its chapters and 240 outpatient clinics throughout the U.S.

National Association of Rehabilitation Agencies 1030 15th St., N.W., Suite 956 Washington, D.C. 20005 (202) 842-1083 This association can provide the latest information on the funding picture for rehabilitation equipment and services in the various states. It also provides the current interpretation of federal and state laws governing funding issues.

National Easter Seal Society 2023 W. Ogden Ave. Chicago, Ill. 60612 (312) 243-8400 This organization can provide addresses and telephone numbers of its local and state chapters. Chapters may provide funds for assistance but also work with other state and local programs. In certain states, Easter Seals chapters have "lending closets" for wheelchairs and other devices for children and adults with physical disabilities.

National Information Center for Handicapped Children and Youth P.O. Box 1492 Washington, D.C. 20013 (800) 999-5599 / (703) 522-3332 This center provides information about special support services and local organizations.

Spina Bifida Association of America 1700 Rockville Pike, Suite 540 Rockville, Md. 20852 (800) 621-3141 / (301) 770-SBAA This association provides referral source information through its 116 local organizations.

Telephone Pioneers of America 22 Cortland St., Room C-2575 New York, N.Y. 10007 (212) 393-3252 This is an organization for retired telephone workers which provides a variety of services, including financial and technical assistance, to youngsters with disabilities and their families.

United Cerebral Palsy Association of America 66 E. 43rd St. New York, N.Y. 10016 (800) 872-5827 / (212) 481-68 UCP will provide assistance children with cerebral palsy well as youngsters with old conditions.
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Title Annotation:1990 Wheelchair Guide
Author:Henke, Cliff
Publication:The Exceptional Parent
Date:Mar 1, 1990
Previous Article:The mobility decision.
Next Article:1990 school mainstreaming contest winners.

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