Medicaid Home Health Benefit Supports Children with Complex Medical Conditions

Managing care for a child with complex medical conditions can be extremely tough for families. The care they need and deserve is extremely expensive and can put a financial hardship on even financially advanced individuals. Imagine being a parent deciding between paying for your child’s healthcare or paying rent that month. Or having to choose between purchasing more expensive healthy food for your other children, or paying medical bills for a child with complex medical needs. This financial hardship and the stress that comes with these decisions is a burden that families shouldn’t have to bear.

As we’ve noted in our earlier blog on OhioRISE, health care is also often difficult to find, especially in rural or lower-income areas. That’s not to mention the struggle that parents face trying to coordinate services and address non-medical needs that affect health like community and social support services. 

That is what section 1945A aims to address. Those eligible are Medicaid-eligible children under age 21 with “medically complex conditions” as defined in the Eligibility Criteria. Beneficiaries that have one or more serious chronic diseases and/or a life-limiting illness or rare pediatric disease can receive services. Examples of chronic conditions included in section 1945A are cerebral palsy, spina bifida, blood diseases like anemia or sickle cell, epilepsy, or a serious mental health illness, among others.  

Eligible participants can receive high-quality health home services that align with the whole-person care philosophy. That means states must provide services that according to a recent State Medicaid Director Letter, “considers all the medical, behavioral, and social supports and services needed by a child with medically complex conditions.” 

Services provided through section 1945A include: 

• Comprehensive care management;
• Care coordination, health promotion, and the provision of access to the full range of
• pediatric specialty and subspecialty medical services, including services from out-of-state
• providers, as medically necessary;
• Comprehensive transitional care, including appropriate follow-up, from inpatient to other
• settings;
• Patient and family support (including authorized representatives);
• Referrals to community and social support services, if relevant; and
• Use of health information technology to link services, as feasible and appropriate

Similar to the OhioRISE concept that we wrote about in an earlier blog and the direction that CalAIM is taking by addressing social determinants of health, services are not just limited to medical care. This is important because family support might not seem like a service that directly correlates to a better health outcome, but consider that parents are often the ones providing care and support day in and day out. Without proper support, they face caregiver burnout, which can negatively affect the care received and the health outcome of the child. Parents often juggle care for other children in the home and work and without support, they can struggle to make ends meet. 

Care coordination and referrals to community and social services are also included to ensure that all the medical and non-medical needs of the child are met. It is often not enough to address just the medical needs of children. Wrap-around care with non-medical services and supports are essential to improve health outcomes and keep children in the community where they belong.

Transitional care is also essential in cases of children with complex medical conditions. These children deserve to receive care where they want and to experience childhood as best as possible. If appropriate, receiving health care services at home can improve health outcomes and allows them to remain active members of the community.