Ripple effect: Supporting children with special health care needs through improved family- focused policies

StablehousingMD_imageAs a clinician who has worked for many years with families with children with special needs, I see parents who try, like all parents, to provide for all their family needs and give the best opportunities they can to their children. Low-income parents raising children with special health care needs (SHCN) face additional challenges in paying for rent, utilities, medical bills, and still having enough money to buy adequate food for all family members.

My colleague, Dr. Jack Maypole, a pediatrician at Boston Medical Center, talks about the families that he and his colleagues have encountered in recent years – particularly families struggling to provide for their children with medically complex needs. Recently he recounted a situation of extreme trade-offs – a child with a severe neurodevelopmental delay was in need of specialized foods, which are frequently very expensive. With rent and utility bills due, the parents of this young child faced a dire choice: pay the rent and utility bills or feed their child. They, like many families, did what they could to meet these competing needs without endangering their child. For them, that day, their decision was to take the child to the emergency room. His parents knew that, at the very least, the hospital could help them to provide the specialized, nutritious sustenance needed by their son and temporarily avert a worse emergency.

Raising children with special health care needs (SHCN) often requires more doctors, specialists, therapists, and teachers than the usual child.  Such visits require parents to take time off from work; for those in lower-paying jobs without paid leave, that may also mean a loss of income. Children with SHCN may have one or more diagnoses ranging from asthma to cerebral palsy. Nationally, 23.6% of children have a chronic medical condition and of those, 40.7% have more than one diagnosis.

If there is something I observed over the years, it is that most parents do what needs to be done for their children, however, this can be both deeply financially and emotionally stressful for families of children with SHCN, regardless of income, and also for members of the family, including the other children. My repeated observations in clinic supported by my research data and others’ have validated the far-reaching ripple effects of raising a child with special health care needs that is reported by parents. Given the higher demands of routine care and unanticipated emergencies taking a parent away from the workplace, caring for a child with  SHCN often impacts parents’ ability to get and keep a job. In turn, this can make it increasingly more challenging to make ends meet. Parents of children with SHCN may need to take jobs where they are under-employed with fewer job responsibilities, or part-time jobs with greater time flexibilities in order to be able to take their children to their many appointments. These are frequently lower wage positions which do not offer paid sick-time and family leave and may not provide opportunities for advancement in the future. If a child requires specialized daycare due to medical, developmental or behavioral issues or physical needs, specialized daycare can be prohibitively expensive or simply unavailable. Therefore some parents are prevented from full or even part-time work to accommodate the child’s needs. Regardless of situation, the net result is limited work opportunities for parents who want to work. With limited employment and mounting bills for medical care, prescription medicine, rent, utilities, and child care, many parents of children with SHCN begin to cut the only flexible item in the family budget: food.

So what can be done?  Solutions must be reached on several fronts – addressing barriers to steady employment as well as bolstering families’ abilities to meet their basic needs. Several states and municipalities across the country have passed legislation guaranteeing paid sick and family leave for employees and President Obama proposed legislation this year to implement similar policies on a national level. Improving economic policies that increase financial well-being among families is critical for working parents of children with SHCN. These policies alone, however, will not completely eliminate the complex hardships facing families. In addition to employment, some families of children with SHCN must seek additional safety-net supports to avoid food insecurity.

Several public assistance programs form the nation’s safety net, helping low-income families to meet their basic needs. The Supplemental Nutrition Assistance Program (SNAP) provides eligible low-income individuals/families with financial assistance to purchase food at grocery stores and farmer’s markets. Families with children with SHCN, however, may not be aware that people who receive disability-based benefits may qualify for a deduction of medical expenses from their income when applying for SNAP.  The deduction recognizes their out-of-pocket expense and helps to boost the benefit and ultimately to sustain a healthy diet. Efforts to strengthen SNAP by ensuring that families who are eligible receive their maximum benefit, are important for improving the health of children with SHCN and the stability of their families. In contrast, discussions about changing the fundamental structure of SNAP by creating a block grant (which would cap funds available for the program), rather than the current entitlement structure (which requires that all eligible households receive benefits if they apply), will further increase hardship for families with children.  This discussed change will limit the program’s ability to respond to family needs and would be particularly detrimental to those who have special health care needs.  .

The Special Supplemental Nutrition Program for Women, Infants, and Children (WIC) provides nutritional supplementation, health care referrals and nutrition education to all low-income children (up to the age of five, including children with SHCN) and pregnant and postpartum mothers meeting financial and nutritional eligibility criteria.  While WIC is fundamentally important to all children in low-income households, the benefit may not provide either enough money to buy foods that meet the needs of children with SHCN or sufficient special dietary formulas or nutritional supplements for children on specific diets. Congress will consider changes to WIC this year. We encourage policy makers to enhance and strengthen the program by ensuring that access to the program is sustained and that the program is sufficiently funded to meet the needs of our country’s youngest children. Policy makers must ensure that the foods available in WIC packages are based on scientific recommendations from health professionals including accommodations for those in need of specialized diets.

Supporting families with children with SHCN requires interlocking solutions – recognizing and deliberately supporting connections between family needs, employment and medical care.