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The STAR Kids Program does not provide effective care for our most medically vulnerable.
The STAR Kids program has failed to provide effective care and support for families with medically complex children who are struggling to keep their families together and children out of institutions. The program's execution has been poor, marked by denials of critical life-sustaining care, significant gaps in care, inadequate networks, lengthy waiting lists to access care, ineffectual support services, regional county-based service areas limiting access to care, and exponential increase in administrative burden. Overwhelmed families have been left trying to piece together a way to keep their child alive and stable. There is a clear need for better healthcare policies and programs that prioritize the needs of the most vulnerable members of society, such as medically complex children.
Unfortunately, the STAR Kids managed care program does just the opposite. It forces children into highly restrictive, county-based service areas without heed to limited pediatric specialty centers, and turns care over to an inappropriate model and private insurance entities with conflicting interests rooted in profitability, limiting access to critical and appropriate care.
Children living with complex medical needs require a hospital or nursing-facility level of care, and do not have any margin for error. Keeping individuals with complex medical needs stable at home in keeping with President Ronald Reagan’s plan is the most effective and moral way to care for our most vulnerable. Inability to access appropriate care and services for children with significant disabilities places greater burden on the caregiver and family, and ultimately, greater burden on the State. Children with complex medical needs require access to appropriate, timely, effective tertiary and sub-specialty care and providers in order to achieve a medical baseline and maintain stability. Forcing a change of facilities and providers causes a significant decline in health, safety, and welfare for already fragile children. These families choose life every day. Each day is a struggle to live survive. Access to appropriate, timely, effective care and supports is vital to survival.
Today, the overwhelming majority of medically fragile children rely on what is known as “Home and Community-Based Waiver Programs” to be able to stay at home, with their families, rather than residing in hospitals and institutions.
Home and Community Based (HCBS) Waiver Programs were developed by President Ronald Reagan to allow children with significant disabilities and complex medical needs to qualify for Medicaid based upon their extensive medical needs, allowing families to provide a hospital-level of care in the home rather than an institution or hospital, keeping families together, increasing the child’s quality of life, and delivering enormous cost savings to the state.
Although it is 1/6-1/10th the cost of institutional care to keep families together and access services in the home and community through HCBS waiver programs, Texas is currently ranked 49th for these critical services and supports. Inability to access these life-sustaining services and supports often results in children remaining hospitalized for months, unable to discharge or access critical services. The wait lists for access to HCBS waiver services in Texas ranges from 5-20 years.
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 catastrophic that families are unable to provide for their vast medical needs through private commercial insurance alone. Most commercial insurance plans do not cover the critical life-sustaining supports and services necessary for this population to survive. These are children who are born with a life-altering diagnosis or birth defect, have ultra rare disorders, and other chronic medically complex long-term disability or condition 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.
In 2016, the HCBS Waiver Programs were transferred by the state into managed care and rolled into The STAR Kids Program, which means the programs were taken over by private insurance companies contracted to the state. While the managed care model may be effective for an average walking well population, it was never intended to serve a population with this level of need and complexity. It is impossible to incentivize children with chronic, complex medical needs into wellness.
The STAR Kids Program is a Texas Medicaid managed care program that applies to disabled children and young adults aged 20 or below who have certain qualifications. Participation in the STAR Kids program is required for those who are 20 or younger, covered by Medicaid, and meet at least one of the following:
The program's managed care approach is meant to enable participants to select a health plan that will provide them with the necessary health services through a network of doctors, specialists, and other providers. Participants in the STAR Kids program are supposed to be able to choose a health plan and a primary care physician or clinic who will provide basic medical services like check-ups and referrals to a specialist when needed.
Unfortunately, however, the program has not lived up to its stated goals and expectations.
The STAR Kids program has been a complete disaster for families with medically complex children who need significant medical care. Families have reported difficulties in accessing specialty care and receiving adequate medical services, which have limited access to care, increased gaps in care, cuts in already inadequate provider rates due to contracting practices, increased denials of care, and ultimately, a decline in their children's health. The program's managed care model has created confusion and frustration among families, who must choose a county-based health plan and a primary care physician who may not know or be able to provide appropriate care for their complex child. . Further, the program's failure to acknowledge the enormous cost savings and improved quality of life that waiver programs provide for medically complex children has added to the financial burden faced by families who have resorted to medical bankruptcy trying to provide for their child's medical needs
Protect TX Fragile Kids (PTFK) is a grass-roots, non-profit organization (501c4) founded and run by parents of medically fragile Texas children.