In order to save money and attempt to provide more coordinated care, many states have shifted–or are trying to shift–most people in Medicaid into managed care plans. While these plans can potentially work well for some individuals, they are rarely created with any mindfulness toward children who have complex medical issues. In fact, these children can suffer tremendously under these programs due to fragmented care, bureaucratic hurdles, and a general misunderstanding of their conditions.
Fortunately, federal law protects children with disabilities in most states from being forced into Medicaid managed care. Under federal law, states can ask children with disabilities to join managed care voluntarily, but as long as children are in one of the protected groups described below, they cannot be forced into managed care. Note that states often neglect to make this choice obvious to families, and many go as far as to automatically enroll protected children.
The Problem with Medicaid Managed Care
While managed care may work well for some groups, it historically does not serve children with medical complexity very well. There are many reasons this is true, including the following:
- Children may be restricted to certain hospitals or medical groups that cannot meet their needs.
- Children may be forced to give up specialists or therapists who can provide the best care.
- Children who receive Medicaid as secondary insurance have extreme difficulty coordinating care between their primary insurance and Medicaid managed care; managed care does not function appropriately when it is secondary insurance.
- Children, especially those with rare conditions, will be unable to see necessary super-specialists out-of-state or out-of-network.
- Care coordination may be fragmented, and care coordinators are not usually capable of coordinating care for children with medical complexity.
- Services such as therapies and nursing may be denied or restricted inappropriately.
- Excess required referrals and prior authorizations lead to delays in care or services that are not provided.
- There may be long waiting periods to receive necessary care.
- Children with complex medical needs may end up costing more under managed care because care is fragmented and children end up in hospitals and ERs more often.
Social Security law specifically exempts most children with disabilities from managed care in 42 U.S. Code §1396u-2(2). This section reads as follows:
(A) Exemption of certain children with special needs.
A State may not require…the enrollment in a managed care entity of an individual under 19 years of age who–(i) is eligible for supplemental security income…; (ii) is described in section 701 (a)(1)(D) of this title [children with special health care needs who participate in their state’s Title V Maternal and Child Health program for children with special health care needs]; (iii) is described in section 1396a (e)(3) of this title [children who require an institutional level of care and receive Medicaid through their state’s TEFRA or Katie Beckett program]; (iv) is receiving foster care or adoption assistance under part E of subchapter IV of this chapter; or (v) is in foster care or otherwise in an out-of-home placement
To summarize, the following protected groups cannot be forced into Medicaid managed care in most states:
- Children who receive SSI payments due to their own disabilities
- Children who participate in their state’s program for children with special health care needs (Title V or Maternal and Child Health program), if applicable
- Children who participate in TEFRA or Katie Beckett waivers
- Foster children or children receiving adoption assistance
- Children in other out-of-home placements
In most states, children with significant disabilities who receive Medicaid will fall into one of these categories, thereby protecting them from being forced into managed care.
Some states may voluntarily exempt other subgroups of children, particularly children who only receive Medicaid as secondary or wrap-around insurance, as well as children in certain types of Medicaid HCBS 1915(c) waivers.
Unfortunately, some states have been able to obtain waivers that allow them to violate this federal law. If your state operates part or all of Medicaid through a state-based model program, usually an 1115 waiver, unfortunately your state may not need to comply with this law. Many states have also begun filing 1915(b) managed care waivers to force protected groups into managed care. For example, Texas recently received special approval through a waiver to place all children with special health care needs into managed care. Other states, such as New Jersey, have created full replacement programs for Medicaid that can also waive this law.
Protecting Your Child
If your state says your child must participate in managed care, you may still be able to avoid it. First of all, make sure your state is giving you correct information. If your child already fits into one of the protected groups described above and your state has a regular Medicaid program, he or she should be allowed to remain in traditional Medicaid instead of moving to managed care.
If your child is not already in one of the protected groups above, it may be possible to move your child into one of them. Apply for SSI if your family is low income, and appeal even if you are denied, since many children are denied the first time they apply. Even if you only receive a few dollars a month in SSI, being part of the program can keep your child out of managed care.
All states have Title V programs for children with special health care needs. In some states, any child–regardless of family income–may receive case management or care coordination services through these programs, but eligibility and services vary considerably by state. Simply receiving this type of care coordination will automatically exempt your child from managed care. Call and apply for your state’s program if your child is eligible.
If your state currently offers a TEFRA or Katie Beckett waiver, apply for the program. Participation in one of these programs automatically exempts your child from managed care. Some states also exempt children who receive HCBS or 1915(c) Medicaid waivers under this provision.
Finally, don’t be afraid to fight your state if it is trying to move children with complex medical needs into managed care. State officials may be unaware of the needs of children who are medically complex. When they are properly educated about the underlying issues of these children, state officials may be swayed to carve them out of managed care programs.
For more information about your individual state and programs, contact your state’s Family to Family Health Information Center.