By Rylin Rodgers, Riley Child Development Center

Too often policy discussions and budget debates are framed in terms of winners and losers at the program, department, or budget line level. Families raising children who have health care needs and disabilities are impacted every day by public policy, systems, and services related to health care, education, housing, nutrition and transportation. For our families this is not wonky abstraction, it is real life, woven into every part of our days. As families, we know that columns and silos are not reality. A child growing up with a complex health care need is the real winner – and frankly too often, the loser. The budget debate, combined with the debate about America’s health care system, may provide the best opportunity in recent memory to see the world of systems through the experience of families.

• Medicaid cuts could end access to home and community based waivers that are so critical to adequate coverage, providing both access to life saving care and protection from economic devastation to access treatment.
• Medicaid cuts and shifts of education funds to private settings that do not provide special education services could mean cuts to therapy and nursing support, as well as increased class sizes for public schools educating children who have disabilities.
• Cuts to SNAP (food stamps) and work requirements could mean no access to food and emergency supports for families who have to leave work to care for a child’s short- or long-term health needs.
• Cuts to training and research programs block the development of the providers and treatments children need.

It may feel like these worries are not part of the discussion and decisions driving policy, and there are many reasons for the disconnect. As we are increasingly hearing, systems are complicated, so much so that thinking beyond one system at a time is challenge for even the most engaged policy maker. Most Americans have assumptions that reflect our values. We believe that America’s children are a priority and that in this land of innovation and plenty, all children have access to things they need. In reality, the lived experiences of families show us massive disparities in access and too many unmet needs, and they show us how interconnected are the webs of systems as they touch individual children.

This American moment is the ideal time for the experiences and worries of families who are raising children with complex needs and disabilities to inform and drive our policy discussion. You can make that possible. Support families in sharing their concerns directly, family leaders should be at every table. Ask questions about policy in terms of the impacts on end users. Shift the narrative at every level to that of the needs of our children. Building, funding and even reforming systems from the frame of the children they serve, drives us forward to the best possible future.