Special Education Resources

Starting the Funding Process

Author - Suzanne Ripley
NICHCY News Digest Number 13 1989 Resources Updated, April 1996

Note: This publication was originally released in 1989 and, as such, does not contain the most current information on assistive technology. NICHCY offers this document on the Internet with the caveat that, while readers can gain basic information about assistive technology from this document, it is important that they supplement this overview with more current readings from other sources. For current resources check out Parent Pals Assistive Technology Resources.

Funding the purchase of assistive technology devices and services of any type can present overwhelming obstacles to families. Equipment costs, along with the service time needed to train an individual in its use, can be high at times, and may need to be updated, augmented, or replaced several times in the coming years. It is encouraging to know that funding is very often available; it may be an arduous task to locate sources and complete forms and questionnaires, but your efforts can pay off.

The following discussion is an overview of the options for a wide range of assistive technology for a wide range of families. Funding is almost as individual as the family applying: it can depend upon the child's needs, the equipment being considered, the potential impact of this equipment, the income of the family, and other issues. Funding may pay for an entire system or cover a small part of the expenses. Once families understand that funding is available, that the process of identifying funding sources and the task of completing the paperwork can be immense, that the entire operation can be slow-moving, and that patience, attention to detail, creativity and stamina are essential, success may be theirs. You may find the information that follows a useful beginning to give you some ideas of getting your investigation underway. These are by no means all the options available; this is an overview. The bibliography at the end of this News Digest lists many additional resources who can provide detailed information on funding. Creativity and networking are the key: this is the first step.

THE CLIENT ADVOCATE

The most efficient and easiest way to begin this process is to locate a Client Advocate. This is a person who is experienced in acquiring funding for assistive technology.

The Client Advocate is frequently a parent of a child with a disability who has been successful in advocating for special education and related services, including assistive technology. The Client Advocate can assist families in selecting, purchasing, and funding assistive technology. Sometimes the Advocate is a professional working in the field or associated with a disability or parent group interested in assistive technology. This person should be familiar with children like yours, familiar with a range of assistive devices, knowledgeable of the entire funding process and, above all, persevering. To locate a Client Advocate, talk to the company selling the equipment, talk to your child's teacher or therapist, talk to disability and parent groups in your area, and talk to other families. The company selling the equipment you are interested in purchasing may be able to put you in touch with other families in your state who have purchased the same or similar equipment or devises. People who've purchased the equipment have undoubtedly also looked into funding availability and can give you tips on whom to call. If the company is reluctant to give out the names of other families, you can suggest they contact these families privately and request that they contact you. This avoids any concerns for privacy, yet still enables you to get in touch with the other families.

If you cannot locate a Client Advocate in your area, you can call the state chapter of a major disability organization, such as United Cerebral Palsy, Spina Bifida Association, American Foundation for the Blind, Easter Seals or a similar organization and ask them to help identify a Client Advocate. You may wish to contact a national association concerned with children who have needs similar to yours to ask for their help. The social work department at the nearest major children's hospital may also be able to help. If you have difficulty finding such organizations, you can contact NICHCY to provide referral to appropriate groups.

THE FUNDING COORDINATOR

Another person who can be of immense help is a Funding Coordinator, if available. A Funding Coordinator is a resource person with the equipment vendor or manufacturer who is responsible for providing funding assistance. Different companies may use slightly different terms for this position, but basically this is someone employed by the company who is knowledgeable about the funding process. Ask the company from whom you are planning to purchase equipment if they have a Funding Coordinator you can contact. Client Advocates and Funding Coordinators should be able to discuss a variety of funding sources with you and be able to narrow the list down to those sources from which you may be most eligible to receive assistance.

KEEPING RECORDS

Throughout the process of research for assistive technology for your child, it is vitally important that you keep detailed, complete records of all reports and medical and educational documents pertinent to the equipment you are considering. No matter who the sources of funding may be, every one of them will require extensive paper work to substantiate the need for the equipment and its potential effectiveness. You will be asked for copies of doctor's reports, therapists' reports, evaluations, school reports and records of your child's needs and progress. Even if the evaluation resulted in a recommendation against the purchase of a specific device, this documentation may be useful in establishing need for more complex equipment. Remember, it is always possible to throw out unneeded documentation; it may be impossible to retrieve missing records. Also remember, NEVER send anyone original copies of these documents, always make copies.

You will also need to establish some sort of correspondence filing system of people and vendors you have contacted. All letters you've written, people you've phoned, and referrals you've received should be kept. People who could not be of help one time may be the very people you need to contact another time. Again, the guideline to the assembly of your files should be: It is better to keep too much than too little.

GETTING STARTED

It is never too early to start the funding search. Even if you haven't yet identified a particular piece of equipment or met with the professionals who will evaluate your child's needs, you can begin your search for funding sources. It may be that funding will be combined from a variety of sources, it may turn out that only certain types of equipment can be funded or that specific documentation is required and this may influence your choice of evaluators and equipment. If your family has medical insurance, you should notify the company of your intent to purchase equipment. Insurance companies vary widely in requirements for filing claims and may require certain documentation at specific times or intervals. You will not be contacting the insurance company to ask their approval but rather for information about filing claims for assistive equipment. If the agent says there is no such coverage, request printed information on your coverage and filing guidelines anyway. Sophisticated technology is relatively new for insurance companies and you may need to appeal your claim. This is why the documentation is so important.

Insurance companies are most likely to pay for medically-based requests. This means that the equipment you are interested in purchasing must be prescribed by a doctor or a doctor has given you a WRITTEN recommendation to purchase this equipment. Documentation should show that your child needs this equipment for medical reasons, or at least partially for medical reasons. For instance, a motorized wheelchair would be based on a medical need; the portable computer might not. However, the insurance company might pay part of the claim for the motorized wheelchair. Letters of medical necessity can also come from therapists, clinics and the parents themselves. The insurance booklet which describes coverage should have a description of guidelines both in terms of the specific equipment you wish to have funded and the documentation you collect. Letters and reports will need to justify the particular medical situations described in your insurance plan. The bibliography at the end of this News Digest list resources for additional information on insurance.

Some families may be eligible for Medicaid. For specific types of equipment under very specific circumstances, a child may him/herself be eligible for medicaid under a waiver plan. To find out more about this, talk to the Client Advocate or Funding Coordinator, if you have found one, or contact your local medicaid office. If you can't find a medicaid office, call the local branch of the state social services office and their staff should be able to direct you.

If your insurance claim has been denied, you can inquire about appealing the claim. Families are successfully using the appeals process to fund assistive technology. An insurance agent can discuss this process with you. Your most powerful advocate in working with denied claims and extent of coverage may be your state's Insurance Commissioner, whose number should be available from any insurance company or state government office. It may be listed in your local telephone book under state offices.

OTHER FUNDING SOURCES

While insurance policies come to mind first in seeking support for the funding of assistive technology, they are by no means the only resource. Some equipment may be funded, at least in part, by the school system. It is important to note that there are no federal regulations which describe this issue in detail. Therefore you, will need to talk to the special education department, your child's therapist and perhaps the state department of special education for details. While schools have paid for certain types of equipment in the past, it is important to remember that if the school system buys the device then they own it. This means that the school system may have policies which place restrictions on where this device may be used, on whether or not it can be taken home after school and during vacations, and what happens to the equipment if your family moves and when your child graduates. This may not be a problem for you; if your child outgrows his need for a device, you will not own unusable equipment and the school will be in the position of offering technological help to another child in need. Be sure to discuss liability insurance and responsibility for repairs if you are "borrowing" school equipment. Whatever the means and steps, schools can be of help in selecting and purchasing assistive devices for children and youth. Work with your school through the assessment and IEP process to identify potential needs and benefits of assistive technology and the school system's role in providing it. Assistive technology is often a related service. Ask the school about your rights in this area. To learn more about your rights, contact NICHCY, or the Parent Training and Information Center, or State Protection and Advocacy system in your particular state.

In some cases, it may be wise to become involved with the PTA, and other school fundraising activities to help increase awareness of the benefits of assistive technology. This collaboration may be the right vehicle by which you access necessary equipment for your child as well as other children.

Parent groups and disability groups may be able to identify other sources. Again, other families who have purchased equipment and successfully identified funding are an excellent resource. Either visit these organizations or place an article in their newsletter seeking help from another family. It is obviously most helpful if you can find a group specifically concerned with your child's disability; however, any group interested in issues of children and youth with disabilities who use any type of assistive technology can be of help.

While other families may be hard to locate because of right to privacy, you can always place an announcement in a special interest newsletter or magazine, or local paper. You can give your name, address and phone number and ask people to get in touch with you. This may be particularly useful if you live in a rural area or cannot easily attend meetings in the evening. You may even find it useful to place an ad on a bulletin board at the local library, in the hospital, or at a nearby school. The school need not be one your child attends or even a school for children your child's age; the goal is to locate families who have purchased assistive equipment and to find outside funding to help with the costs.

Nonprofit civic organizations may provide funding in total or part. For details on what sorts of equipment are funded and how much is allowed per person, contact groups such as the United Way, Kiwanis, Rotary, Lions, Shriners and Masons. Some may offer to match funds provided by other organizations. In some cases, they may be able to provide funds for evaluations or help with travel costs and arrange lodging for families who will need to go to other towns for evaluations.

Private corporations and local businesses may become involved in the purchase of equipment to help a local family. This can be of benefit to the business by providing positive local exposure and feelings of good-will in the community as well as providing tax benefits for charitable contributions.

Private and public fund-raisers are another resource. Churches and other religious groups, members of other organizations such as sports clubs, unions, PTAs or neighborhoods can successfully conduct fund raising events. Bake sales, raffles, dinners, yard sales and other creative ideas have been used to raise money to help families provide for their child's special needs.

Depending on the technology you are interested in, the Vocational Rehabilitation program in your state may be of help. Each state has a department of Vocational Rehabilitation; the number should be in your local phone book under state offices or available from your local public school. Remember that Vocational Rehabilitation services are state run programs and eligibility will vary from state to state. Competitive or supported employment is a realistic goal for youth with disabilities, therefore Vocational Rehabilitation offices may be interested in providing a student with the equipment he needs to reach his potential both educationally and in the area of personal independence. Contact this office and ask what kinds of funding they can provide.

Many banks have monies set aside for specific purposes called trust funds. The trust officer of a bank can tell you if there are funds earmarked for disability issues, assistive equipment, local philanthropy, members of certain religious groups, veterans, members of certain ethnic groups, etc. Be creative in asking your questions; there may be a fund which covers your needs.

There are even "wishmakers." These are organizations or individuals who grant wishes to people who have specific needs. You may be able to get a list of such people in your area by contacting disability groups, hospital social services departments, the local newspaper, or your Client Advocate. For example, the Sunshine Foundation is a national organization which grants wishes to children with chronic disabilities. They review each request individually and may fund the entire "wish" or fund part of a "wish" if it exceeds their financial limits. This is one of several such organizations. It is located in Philadelphia, PA, and can be reached by calling (215) 335-2622.

TIPS TO REMEMBER

If you have some ideas of funding sources when you visit evaluation clinics, you can discuss the requirements of these funding sources with them. Reports can be written to provide the information needed by funding offices so your documentation will reflect the information most likely to gain approval for funds. This is also true when requesting reports from medical personnel, therapists, and schools.

Finally a word about taxes. As Ben Franklin said, "A penny saved is a penny earned." Expenses associated with applying for funding, including travel expenses, child care, long distance phone calls, lodging expenses, costs of evaluations and consultants may be tax deductible as medical expenses. The Internal Revenue Service, listed in your local phone book under U.S. Government, can provide you with a guide to deductions allowed for medical expenses. If you are unclear on particular items, you can phone the IRS and talk to their staff. It's a complex task to locate and acquire financial assistance for assistive technology. It requires a real commitment and a positive attitude. It certainly requires time and organization, great attention to detail, following guidelines and rules to the letter, and providing impressive documentation. Other families have found funding and there is a good chance yours can also.

IN SUMMARY

The process for funding assistive technology can be complex. This process can be made less frustrating and confusing by taking the time to think about your needs and developing a strategy. The following steps may help you to develop such a plan and to enter the funding process:

1. Assessing needs. Consider your child's strengths and needs and think about developmental areas where assistive technology may be beneficial, including: motor, communication, environmental, cognitive, and employment. Then list questions you have about assistive technology, and possible sources of information. Next, consider the costs. What are your financial resources, where do you think help is needed?

2. Make goals. From your list of needs, make goals. For example, your goal may be to locate types of augmentative communication devices for your child. Look at your list and prioritize each goal.

3. Plan activities to reach each goal. Determine specific activities which will help you achieve these goals. Activities include contacting resources for additional information about technology, obtaining an evaluation for your child, and beginning to plan a strategy for obtaining funding, among others.

4. Make a time line. For each activity, plan the time necessary to complete the activity. Sequence the goals in steps that will help you accomplish more difficult goals. In many cases, you will find that you can accomplish several goals at the same time, while other goals can not be started until more attainable goals are completed.

5. Contact sources of help. Begin to document your journey. Contact those who can assist you in your plan, and who may help you revise it. Keep records of contacts and documentation of potential assistive equipment, as well as any evaluations. Make a file with subdivisions to include these areas, as well as insurance and other financial information.

6. Locate a funding advocate. This may be one of the most important goals of your plan.

7. Devise a funding strategy. From the potential sources discussed, plan a funding strategy which encompasses each of those appropriate to your situation. Once again, a time line will be useful. It is possible that one source will fund a piece of equipment which can be useful until another funding source (or combination) is used to finance a more complete system, or advanced assistive device.

8. Evaluate your plan. Planning requires flexibility. Goals and strategies can be modified, changed, and deleted. Also, children grow and needs change. Remember to base your plan on your child's needs, and how best they can be met with any available assistance. Be prepared to modify your plan as your child grows, as needs change, as legislation makes technology more accessible, and as funding sources and other information become available.