Why Should We Protect TX Fragile Kids?
Protect TX Fragile Kids (PTFK) is a grass-roots, non-profit organization (501(c)(4)) founded and run by parents of medically fragile Texas children. Our stated mission is:
(a) To give a voice to Texas’ most fragile citizens; (b) To inform, educate, and support families of children with disabilities; (c) To fight for what is right for children with special medical needs and disabilities; (d) To champion public policy which supports and protects the well-being of children with disabilities and complex medical needs; (e) To monitor existing and proposed legislation impacting children with disabilities; (f) To empower families with children who have disabilities and complex medical needs to connect with elected officials in order to promote understanding of this life.
We are dedicated to advocating, educating, and informing families and elected officials alike about what it is like to provide a hospital-level of care in the home, and live with a child who has significant medical needs and requires constant care and medical intervention to stay alive. Above all, we are dedicated to advocating on behalf of the best interests of vulnerable, sick little Texans, who have no voice and desperately need someone to speak on their behalf and defend their interests. If the State of Texas is truly committed to a culture of life, then appropriate care for our state’s sickest kids must be a priority. Morally, financially and politically, it is in the best interests of the state of Texas to protect their most fragile little citizens.
PTFK was founded in May 2016 in direct response to the changes made by the state of Texas which plunged this vulnerable population into an inappropriate and highly resctrictive managed care nightmare, also known as the “STAR Kids Program.” In years past, medically fragile children had to remain in hospitals and institutions due to the nursing-level care requirements and significant daily medical interventions required to keep them alive . Today, the overwhelming majority of medically fragile children rely on what is known as “Waiver Programs” in order to be able to stay at home, with their families, rather than residing in hospitals and institutions.
Waiver Programs allow children to qualify for Medicaid based on their medical needs, thereby allowing families to provide a hospital-level of care in the home, increasing the child’s quality of life and delivering enormous cost savings to the state. Waiver programs do not mean that families are not providing for their children, but that the care and needs of a medically complex child are so great that families are unable to provide for their vast medical needs through private commercial insurance alone. These are children who are born with rare disorders and birth defects, and many other health challenges which require ongoing, intensive medical intervention in order to stay alive and at medical baseline. Many of our families have experienced or faced medical bankruptcy trying to provide for their child’s medical needs. Read more here.
Families of medically fragile children should be empowered to work with their existing care teams, and make their own decisions in the best interests of their child’s health. Unfortunately, the STAR Kids managed care program does just the opposite. It forces children into highly restrictive, county-based service areas without heed to pediatric specialty centers, and turns these children’s care over to private entities with conflicting interests rooted in profitability, thereby limiting access to appropriate care.
Inability to access appropriate care in a timely manner for medically complex children results in life or death situations. The lives of these fragile children do not have any margin for error. It also places greater burden on the caregiver and family, and ultimately, greater burden on the State. Children cannot be successfully rehabilitated without access to appropriate, timely, effective tertiary or sub-specialty care. Forcing a change of facilities and providers causes a significant decline in health, safety, and welfare for already fragile children. These children are sick: every day is a struggle to live. We cannot limit their health care.