Vol. 4, No. 3, May/June 1996	Previous Issues Subscribe to AT Messenger Download PDF Viewer
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Financing Assistive Technology
A Case Study: Not Just A Matter of Who Pays

Ron Sibert, DATI Funding Specialist

Although various agencies and programs will pay for/provide assistive technology (AT) devices and services to qualified individuals, it is not always clear who qualifies for what and under what circumstances a given agency will pay. This is especially true when there is more than one possible payer. In so many instances though, the issue of how to get equipment and services paid for is just one of several issues to be resolved in the process of achieving the desired outcome. Many of the inquiries we get from both consumers and service providers involve much more than the question of who pays. AT funding can seldom even be discussed apart from the underlying agency policies and the responsibilities of various parties (including the consumer). Results often depend on how well these factors mesh or interact. Sometimes the issues get to be somewhat complex. The following account of a recent inquiry is an excellent case in point. Even then, however, the solution almost always involves returning to the basics, careful attention to detail, and focus on outcomes.

Parent's Story:

I'm pretty new to the disability arena, and the more I learn, the more concerned I am about the prospect of getting an appropriate education for my teenage son, Frank (not his real name). A short time ago, Frank sustained a serious head injury in an auto accident. Although the accident left him with some significant limitations, he's still a clever, capable kid. I'm sure he could benefit educationally if I could just get the school to provide more challenging educational materials for him, and to work with me on getting his other needs properly addressed. After he was released from the hospital, Frank was placed in a school for kids with disabilities, and his teachers now report that he's become increasingly difficult to manage over time, and unresponsive to school staff. Even without his behavioral problems, I know that Frank's situation is already quite challenging. His speech and, I'm told, his learning have been affected by the accident; and since he also can no longer walk, he has to use a wheelchair to get around. In addition, Frank is tube-fed, so he may need assistance with feeding and sometimes toileting as well. Occasionally, he pulls his tube out of his stoma, and if it is not replaced promptly, there can be significant complications. I've discussed our options with the administrators at Frank's school, and they say that there is no way for the school to safely accommodate Frank's needs without having a nurse at his immediate disposal while he's at school. Although we have fairly comprehensive medical coverage with our private medical insurance and Frank's Medicaid, none of the insurers will cover continuous nursing care/supervision because they say Frank's medical condition does not warrant that level of care. We certainly don't have the money to pay for a nurse. I was at wits end before I recently learned from another parent that the law requires the school to provide whatever services my son needs to help him benefit from his education. When I asked the school administrators about this, I learned that while they were willing to work with me, they only have two nurses, and both have very full caseloads. It is also not feasible for either of them to provide the level of supervision that Frank requires. In addition, they told me there is no money in the budget to hire another full time nurse, and their regular staff are not qualified to replace Frank's tube in an emergency. Reinserting Frank's g-tube, by the way, isn't rocket science; I've done it on several occasions myself.

Frank's feeding is only one of several major concerns. Before his release from the hospital after the accident, a speech therapist recommended a simple electronic communication device with a big red switch. Frankie refuses to use it-I think because it looks like a child's toy and it embarrasses him. Similarly, the educational materials made available to Frank at school, while computerized, are not very age appropriate. It seems Frank's teachers don't believe that he can learn from more advanced materials. I happen to know that my Frank is a lot more capable of learning than his teachers believe he is. If he were given more time on a computer with age-appropriate tasks and software, I'm sure he'd surprise them with what he can do.

School Administrator:

This school and its staff are making every effort to provide an appropriate education for Frank. However, he has an array of problems that we simply are not equipped to address. Many of Frank's needs are medical, and we are willing to help when those needs are barriers to his education. Beyond that, however, our limited staffing and financial resources cannot accommodate him without significant external support. For example, if Frank's g-tube gets dislodged, our regular staff are not qualified to handle the problem, and State Code prohibits anyone except an RN from administering medications/treatments, etc. We have about fifty students who require nursing intervention, and only two staff nurses to attend to their needs. Neither of them would be able to provide the level of supervision that Frank requires, and Medicaid coverage for a one-to-one nurse for him is not an option because ongoing nursing supervision is not covered for Frank's condition. Even if Medicaid reimbursable service were possible, the school would still have to cover 50% of the expense on an ongoing basis.

This situation has also been quite challenging from an educational perspective. Frank had an attention deficit disorder even before his accident, and his medical and behavioral concerns only serve to compound the problem. His parents have objected to the elementary approaches we've taken with him, and are considering moving him to a regular school in his resident district. We do not believe that Frank can benefit from more advanced educational materials until he can increase the duration of his on-task behavior. Moving him now to a less restrictive setting before he has been adequately prepared would do more harm than good. In spite of the formidable challenges we face in attempting to meet Frank's needs in his current placement, we believe he has a better chance of having his needs properly met right where he is.

***

Obviously, this situation is not just a case of who pays for what and when. Resolving the problem will require some give and take on both sides, but, as usual, there are feasible options.

Many of Frank's educational limitations related to his medical condition can be addressed at school. Schools routinely provide related services such as nursing and therapies when required as part of a student's special education program. In this case, however, there is not only a question of how much and who pays, but a question of HOW such services can be provided. First, it should be noted that the school has the right to require the parents to use their insurance to cover medical services if the necessary services are covered and filing a claim would not cause the family any "hardship." The school may also elect to pay the deductible or co-payment on the family's behalf in such instances. Clearly, the supervision that Frank needs is medical in nature (as required for insurance reimbursement), but the severity of his condition does not qualify him for ongoing nursing supervision. Also, while the school must provide whatever services Frank needs in order to benefit from his special education program, it must also operate under certain legal and financial constraints. So the search is on for options...

Depending on one's background or exposure, several practical solutions to the g-tube problem may come to mind. For instance, a rehabilitation engineer or occupational therapist might consider designing a barrier to Frank's tube and stoma that keeps them out of reach. A psychologist might suggest instituting a behavior modification program to reduce the frequency of the problem's occurrence. Several solutions my be possible, but in all cases, the underlying policies should be carefully examined. In this case, doing so would have made quite a difference. It turns out that there maybe some "give" in the State restriction that permits only RNs to administer to Frank's parenteral feeding situation. Further investigation revealed that private nursing firms in the State routinely train parents and others to intervene in situations similar to Frank's with a doctor's authorization. Having regular school personnel trained to properly reinsert or replace Frank's tube in an emergency is therefore a feasible, low cost option.

Solutions to other problems presented here may also have been a matter of correct application of policy or even generally accepted professional practices. For example, Frank's refusal to use a recommended communication device may have been an indication of need for a speech therapy reassessment. A proper assessment would include an exploration of perhaps several options (with the user's preferences being given ample consideration) so that an appropriate device could be selected. Note that such determinations typically require more than just one or two evaluative sessions. Needs, functioning level, and preferences generally change with time...particularly for children and youth with disabilities. Frank's situation was somewhat unique in that his initial speech evaluation was done during a tenuous recovery period following trauma-after which significant changes in his condition and his abilities might have been expected to occur. Even so, follow-up in the form of periodic assessment is still always advisable.

Finally, the issue of age-appropriate materials and the need to address basic skills and behavioral issues are viewed in the case as being unrelated (even conflicting) concerns, when that is not necessarily the case. For instance, parents and school personnel working together might identify reinforcing, age appropriate materials and activities. The team could then incorporate these into a curriculum that addresses basic skill development. Properly structured, such activities could help reduce maladaptive behaviors while increasing on-task performance and, to some extent, skill acquisition. However, this approach assumes that some member(s) of the team possess the skills/training to formulate and properly implement such a plan. Therefore, an important part of the team's task after identifying the problems would be to assess the team's ability to address those problems, and to correct possible information/skill-related deficiencies before the planning process begins.

Several general lessons/conclusions also may be drawn from this case. One is the need to gather and maintain accurate information from all relevant sources, and to use that information (and/or involve the sources themselves) in formulating the solution. Close attention to detail and "doing it right the first time" is also quite helpful, and will usually result in the most economic and effective solution. Next, acquiring and/or providing services is usually done collaboratively. Mutual respect and willingness of all parties to work as a team toward a common goal are therefore important parts of the process. Employing these general strategies greatly increases the likelihood of success in choosing, acquiring or funding assistive technology devices and services-regardless of the funding agency or the nature of the needs being addressed.