OTHER STRATEGIES FOR FUNDING

Families become aware that one source of funding alone is often insufficient for all the supports and service their children need. Planning, blending and creative funding strategies are required.

Families are sometimes surprised that supports and services are entitlements only for those children that “qualify”. Discovering that each system of support has different eligibility requirements and that there are waiting lists for services even if their child qualifies is very disappointing.

ALWAYS HAVE ANOTHER PLAN!

The old expression of not “putting all your eggs in one basket” fits perfectly for funding strategies for children with special health care needs. If a family is focused or convinced that the only means of funding supports and services for their children is private health insurance, and the family loses the appeal for services denied, they are devastated. However, families will become calmer, more effective negotiators if they have plans B, C or D waiting in the wings.

WHAT ARE PLANS B, C OR D?

The family has to discover strategies that work for them. For example, clergy and their congregations are people ready, willing and able to help others. They might not be able to provide therapies themselves, of course, but they can fund raise, help with meals or other costs, and they feel good about the opportunity to help a deserving child and family.

Another strategy is to change insurance coverage. For example, if the family is currently paying premiums of $500 per month and the only benefits needed by the family are not covered benefits, the family could consider purchasing “catastrophic” coverage at a considerably lesser rate and use the savings to pay for supports and services for their child. Catastrophic coverage often has a very high deductible, like $5,000 or $10,000, but the premiums are low. If the family truly has a catastrophe, they will be out of pocket for the high deductible, but in the meantime, they will have been better able to afford services they currently need for their child.

Another potential plan is to discover what schools and center programs offer. Often, children might be able to qualify for more intensive services through schools. Center based programs are often reasonably priced.

Sharing the cost of play-based therapy time with other families is a consideration.

A tremendous resource for families of children with special health care needs and disabilities is the Parent to Parent list serve. The list serve currently has about 1500 Colorado families communicating about resources, politics, funding strategies and recycling of the durable medical equipment, such as wheel chairs or communication devices, which their children have outgrown.

Mile High United Way produces a CD ROM which lists resources by funding categories. Public libraries can provide computers for families to use to access this information.

Employers sometimes have funds or collaborate with foundations for the benefit of their employees.

Some disability specific organizations have one time funding opportunities, such as the Autism Society’s respite fund for members.

Family Voices provides both the Funding Guide by Age and The Funding Hierarchy as reminders of the different opportunities for families to explore.

Blending and creating funding takes time and expertise. Funding that is in place can change rapidly. Systems change, delete resources or change eligibility requirements. Non-profits that once offered financial support may themselves not have the resources to fund the needs of children they supported. Families must be supported in the journey of learning how to develop and maintain funding resources. It is difficult to learn that supports and services might not be an entitlement and that the burden of caring for their children is more immense than they imagined. Support groups offering TLC (Tender Loving Care) can be very important resources during the early years of families with children with special health care needs and disabilities.