Too often, policy, tax and budget debates are framed in terms of winners and losers at the program, department, budget line, and income group or business level. For our families this is not wonky abstraction, it is real life, woven into every part of our days. Families raising children who have special health care needs and disabilities are impacted every day by services related to health care, education, housing, nutrition and transportation. In these debates, a child growing up with a complex health care need or disability is the real winner – and, frankly, too often the loser. The tax debate, and the coming year end budget showdown, combined with the now ever-present 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 found both in the tax and budget bills 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.
As reported by the nonpartisan Congressional Budget Office, because it adds $1.5 TRILLION to the deficit, the tax bill will trigger automatic PAYGO cuts to programs in fiscal year 2018 that could total $136 billion.
Pressure for cuts to education funding could mean cuts to therapy and nursing support, as well as increased class sizes for public schools educating children who have disabilities.
Pressure for cuts to SNAP (food stamps) 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.
Pressure for 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. 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 the 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 health needs and disabilities to inform and drive our policy discussion. You can make that possible. Speak up in support of tax and budget policy that protects critical services and supports children and families. 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 opportunity to that of the needs of our children. Tax policy developed from the frame of the children they serve could drives us forward to the best possible future.