HSS families are almost always interested in finding new and better ways of improving the quality of life of the family member who has the disease. Families might seek help from technological innovations, therapists and educational institutions. But finding ways to pay for the patient’s special needs can be daunting.

Chip Clarke, President and CEO of Assistive Technology Works Inc., who spoke at HSSA’s First International Family Conference in Bethesda, Md., in May, brought samples of products available, and offered these tips to help families navigate the process:

* Potential sources of funds for such items as a special laptop computer to help the family member communicate include public insurance, such as Medicaid, private insurance, educational funds and private donations.

* You need to know the payer’s goal in funding such devices or therapies and be able to justify the need for the device or therapy in a way that is compatible with the organization’s purpose. If it’s a communication device, for example, medical insurance payers, public and private, are not interested in the patient’s need to communicate at school. They want to know the device is for communicating basic needs at home. Some private payers may not cover communication devices, such as a computer that says the words the patient types.

* If you have private insurance, try that source first. Then try public insurance, such as Medicaid. States vary in how they provide assistance. Tennessee, for example, has mobile assessment teams that visit patients in their communities.

* If you are seeking aid for special educational or vocational equipment, it’s best to involve professional educators, nurses and therapists in developing a plan for the patient. They can help you produce a report stating why the device is needed. They also can be helpful later in training family members in using the equipment. Further, the team can assist if the payer denies the funding request.

* If you are seeking money for a vocational education purpose, you should emphasize that the device or therapy is needed to help the person live independently at home and/or function in a job setting.

* It is best not to recommend a specific device. However, if you believe the patient will benefit from having some kind of communication device, don’t give up. Just be open to other communication devices you might not have considered.

* You can get devices during a trial period.

* When buying devices, try to choose equipment that can be used for long periods of time.