For the past few months, Congress has proposed legislation that failed to meet the needs of our state's children, particularly those with special health care needs. Proposals included gutting Medicaid, eliminating consumer protections, and increasing the number of families who are uninsured, which would all threaten the livelihood of our state's children. The time to take action is NOW.


​​"The U.S. Senate's health care legislation, at last unveiled today, fails to meet children's needs."

- The American Academy of Pediatrics (June 22, 2017)

PARENT Sign on letter

Dear Senators,

Like most parents, you have probably known the anguish of seeing your child in pain or peril and being unable relieve their pain. At such a time, you are desperate for the help of others who have the skills or power to help your child. We are writing to you because we are desperate for your help in protecting our children, and all children who have special health care needs. The Senate is about to pass legislation that puts them in grave danger.

Like all parents, we strive to give our children unconditional love, to nurture their gifts, to teach them well and – most basic of all – to guard their health and safety. It is that most basic responsibility that is a special challenge for us, because our children need medical care that is beyond our ability to provide. Medical care and services are unaffordable for most ordinary families if they have a child with  a serious medical disorder —such as multiple sclerosis, hemophilia, cystic fibrosis, cancer or severe asthma. The same is true for children who have a mental or intellectual disability, such as Down syndrome, autism, severe depression or addiction. The costly treatments and medicines, numerous doctor visits, and frequent hospitalizations that our children need would simply not be available, were it not for good insurance or Medicaid. Such coverage gives us the peace of mind of knowing our children’s medical needs will be met, enabling us to strive to fulfill their other physical, emotional and spiritual needs.

Medicaid and CHIP cover most Tennessee children with special health care needs, providing comprehensive services that our children need, but that would not otherwise be available to them through commercial insurance. Among Medicaid’s unique benefits are screening and diagnostic services vital to identifying and addressing special health care needs at the earliest possible age, when care can shape the entire future course of children’s lives.

Because of our children’s vulnerability, elimination of insurance safeguards and cuts in federal Medicaid funding put them at grave risk. The Senate’s health bill would allow states to easily waive the requirement to cover Essential Health Benefits, which allows insurance companies to price people with pre-existing conditions out of the market and to reinstate annual and lifetime limits on coverage. The Medicaid reductions and restructuring now being proposed will force states to make tough choices that will inevitably impact those whose care is the most costly. States will be forced to eliminate any coverage that Medicaid law treats as “optional,” but that is absolutely essential for children like ours. That includes home and community-based services (HCBS) that enable many families to care for children who would otherwise require institutionalization. Federal Medicaid cuts will also mean the end of the Medicaid Spend Down program.  That program cares for children who are otherwise financially ineligible and whose catastrophic medical care is unaffordable for all but the most affluent.

We are not concerned only for our own children. Some of us have lost our children and want to make sure that other children have every chance to live and be healthy. Because of our experience, we know and share the anguish of the millions of other parents who also worry about what Congress might do to their children’s health and lives. Please help us protect all children’s futures by protecting insurance safeguards and maintaining full federal funding for Medicaid. Like you, we love our children dearly, and we want all children to have the care they need and deserve.


  • TJC is looking for parents to submit letters to the editor to their local papers about the importance of healthcare coverage for their children.
  • TJC is looking for parents to participate in ongoing media events throughout the year.