There is a persistent myth that health care is available to all who truly need it, for free. Too often when policymakers are considering large changes to important programs, especially cuts, armies of advocates, analysts and policy wonks make dire predictions contradicting that myth. It is rare that we follow up to learn how people manage in the wake of those changes. People fall off the radar screen. It is assumed that if no one is complaining, there must not have been any harm.
In the spring of 2003, Connecticut faced a serious state budget deficit. In response, the legislature and Governor cut funding to HUSKY health coverage for 21,000 working parents. Five thousand lost coverage that spring, but because of a successful lawsuit by legal aid on behalf of HUSKY parents 16,000 were given a two year extension. Those two years will be up on April 1, 2005.
HUSKY is Connecticut's Medicaid and SCHIP programs, providing comprehensive health coverage to over 300,000 children and families, the vast majority of whom would otherwise be uninsured. The working parents who were cut from HUSKY, or are about to be, live in families with incomes of 100 to 150% of the federal poverty level, or $18,850 to $28,275 for a family of four.
This study followed seven families with one or more members who lost HUSKY and another on the brink over 2004. The families were not chosen for dramatic stories or because they illustrated a particular point. On the contrary, we searched for typical HUSKY families to reflect common experiences.
These families represent the diversity of HUSKY parents. They live across Connecticut, in cities and suburbs, in single family homes and apartments. Three are grandparents raising grandchildren, one while still raising a young son. Six are married and two are widows. Each family has one or two children. The average annual income of these families is $23,841, ranging from just under $14,000 to $41,000. Homelessness has touched two families and domestic violence another two. Sudden job losses are common; many work at more than one job at a time. All have carried medical debt at some point, often considerable amounts. All struggle to make ends meet.
It was hard to get most of the parents and grandparents to talk about themselves and their health needs. Most kept turning the conversation to their family's needs. Every parent and grandparent made it clear that they would not let the children share in their sacrifices. In every case, the children's needs came first.
One family experienced a crisis of exactly the sort predicted by advocates. Elizabeth is a fifty-two year old widow, a substitute teacher in New Haven, with high blood pressure. When she lost HUSKY, she could no longer afford the medications to lower her blood pressure. Near the end of the year she was admitted to Yale-New Haven Hospital for four days with a heart attack. The good news is that because of her medical bills, she became eligible for Medicaid coverage again. However, she will only keep that coverage for six months. Her hospital stay likely cost the state around $40,000; continuing her HUSKY coverage for the year would have cost $3,144. While Elizabeth is back to work, watching her diet, taking her medications and doing everything she can to stay well, she is at high risk of another heart attack. And she doesn't know how she will pay for her medications after Medicaid runs out.
In one respect these families are not typical; they have an advantage. We didn't just observe their lives as researchers, but we intervened - we helped. All received case management, intensive in some cases, by staff from both the Connecticut Health Policy Project and Student Health Outreach in New Haven. These families also tended to be more sophisticated in navigating systems and came to us with experience and skills in advocating for their families. It is important to remember this while reading their accounts - in many ways, these stories represent the best case scenario for families losing HUSKY.
They employ several coping practices common to the uninsured. All delay care when they are not insured. They do not get regular checkups or other preventive services. Several have price shopped for services and negotiated bills with providers. They get drug samples, barter for services, and set up payment plans. All noted that getting care without insurance is complicated and time consuming. There are few sources of information; most rely on word-of-mouth for recommendations. Many are dieting and exercising to maintain their weight.
Some described difficulties getting care under HUSKY compared to private insurance. But all made it very clear that HUSKY was far better than having nothing. Some described insensitive and inappropriate behavior by providers and billing staff. Some were angry about this, but most dismissed it as ignorance.
All agreed that people should pay something for their care. None wanted a free ride. Several were very emphatic about this point. But the options available in the private market are not realistic and paying as they need care is risky. There is very little discretionary spending. They mainly rely on debt to finance the minimal care they receive.
A search of on-line health insurance quote services for the oldest and youngest parents in our study found that the only options available have deductibles between $500 and $5000, 20% coinsurance standard, and minimum monthly premiums of $400/month for the oldest and $166.60/month for the youngest. These costs would consume one quarter to one third of these two families' incomes. No plans covered prescriptions or dental care. Most do not cover preexisting conditions for twelve months - an important issue in all eight families.
These parents' experiences should put to rest the myth of free health care to all who need it. These families are resilient success stories with enormous stores of strength. However, health coverage is critical to their well being and HUSKY has been a lifesaving support to all. These families let us into their lives because they know that policymakers rarely hear from the people directly affected by their decisions. They also know that they are not alone. It is in the hope that it will make a difference that they shared their stories.
In 2005, in response to public pressure, the legislature and the Governor restored eligibility for HUSKY parents. Unfortunately, thousands of eligible children and parents in Connecticut don't know about the program and remain uninsured. Parents and grandparents raising grandchildren in Connecticut families of four with annual incomes up to $29,025 can now get comprehensive health coverage. If you or someone you know might qualify for HUSKY, call 1-877-CTHUSKY or go to the HUSKY Health program web site.