In Their Own Words

Leslie, New Milford

It is very difficult to get Leslie to talk about her own health and losing HUSKY for herself and her husband. The conversation keeps coming back to her son, David. Leslie had David later in life and he is clearly her joy, the center of her life. David is sixteen; he suffers from several illnesses, social and learning disabilities. His providers have described his case as a “diagnostic puzzle” and they’ve “never met such a complex case”. Coordinating his care between a dozen or more professionals is a full-time job for Leslie. David’s conditions also cause him to become difficult to handle at times; on occasion, she has needed medical treatment because of his outbursts.

Leslie describes herself as a “workaholic”. When we first met her, she was working three jobs to keep her family solvent. Her husband is working two. The first time we talked, she kept apologizing because she’d only had three hours of sleep the night before. “I’m running on empty most of the time.” She started working at the age of sixteen and put herself through college. She and her husband were doing very well – living an affluent life with a nice house in the Litchfield Hills, working at fulfilling jobs, and earning comfortable incomes. “I loved working. I had a passion for my job.” But when Leslie became pregnant at the age of thirty-nine, they decided that she would stay home to care for their son.

Abruptly two years ago, her husband lost his six-figure income job, they lost their beautiful house and were living in a motel when we first talked. At the time, HUSKY was a critical support for the whole family, both financially and for the entire family’s health. Without HUSKY, that crisis could have destroyed her family and Leslie is grateful. However, she always saw HUSKY for herself and her husband as temporary – just until they got good jobs and back on their feet. Between their five jobs, together they now make half of what he alone used to earn. They have since moved into a modest home in the area. Leslie really wants to find a flexible job that will let her work around her son’s schedule and includes health benefits, but there aren’t any.

Leslie is a determined and resourceful advocate. She is a parent representative on several state and local task forces and councils. She has formed an informal network with dozens of other parents of children with special needs. She is tireless in finding the right providers to treat her son’s issues, and following up to make sure he gets what he needs. State agencies that are supposed to help her have been useless at best and a serious barrier to care in many cases. She gets no respite care; she is fully responsible for David’s care when he is not in school.

Last summer David’s condition deteriorated and Leslie had to make a very difficult decision to have him hospitalized. He needed more intensive care than she could provide at home and the complex regimen of drugs he was taking needed to be modified. Unfortunately, that very difficult decision Leslie made to improve her son’s health had a devastating impact on her own health – she lost HUSKY for herself.

It is a rather long story and Leslie cannot tell it without getting understandably angry. She received a notice from DSS that because her son was no longer living with her and her husband, they were no longer eligible for HUSKY. She called and told her worker that the only reason her son wasn’t living with them is because he is under treatment in a hospital, but would be coming home directly (which he did). DSS acknowledged the facts and she was told to file a complaint. She received some information, but there was no deadline in the paperwork. “If the language was clear, I’d have been damned sure it was in on time, by registered mail.” The counselors at her son’s hospital advised her that this was just a mix-up and of course she would be reinstated on HUSKY. She was confident that this was just a minor inconvenience, a small bump in the road, and everything would be all right.

Leslie’s coverage was denied. In a very insulting phone machine message, the reason a DSS worker gave had nothing to do with the merits of the case, but because Leslie filed the paperwork six days late. No appeals possible. She was just out of luck. Unfortunately when David came home and she was eligible to apply for HUSKY again, even their modest income was now over the new, lower HUSKY parents’ income limits.

Leslie has been diagnosed in the past with depression and is clearly under a great deal of stress. When she had HUSKY, she got counseling and was on six medications for anxiety, high blood pressure and hormone replacement therapy. She was stable. However, since she lost HUSKY she gets counseling intermittently through a grant-based local mental health program at New Milford Social Services. “I don’t know where I’d be without them.” Sometimes she can get medications as samples and through drug company programs but it is inconsistent. “I miss a lot of doses.” She goes to the community health center in Danbury when she needs to and feels very lucky to have that. Her husband needed a great deal of care at the clinic after he lost his job, “he collapsed from the stress.” Their bill was only $25. Their hospital has been great, never pushing for payment.

She admits that she feels less stable now, that “things are crashing down around me -- it never gets any better.” She has some outstanding balances with her doctors, and they won’t see her unless she pays them off. Once in awhile a doctor will see her, for free, if he has a hole in his schedule. One doctor saw her for an initial consultation, said her case was “too complex” and he couldn’t treat her, but sent her a bill for $125. She had a hysterectomy a few years ago, and should be getting follow up monitoring, but hasn’t been able to since she lost HUSKY. She has allergies that are getting worse. She remarks, “It’s very time consuming to find care without insurance.”

For most of their lives, Leslie and her husband had health insurance through their jobs. She emphasizes “We were NEVER without health care.” Like most of us, she didn’t realize how lucky they were until she lost it. She had two surgeries under private coverage, “we didn’t pay a thing.” When she was at home caring for their son, they were all covered under her husband’s employer’s coverage. After he lost his job they paid for COBRA. It was $880/month for all three of them, with mountains of copays – four times what they paid when her husband was employed. But now even COBRA is gone. The only job they have between them that comes with an offer of benefits would cost them $300/month, which they can’t afford. Luckily her son still qualifies for HUSKY because of his disabilities.

Like most parents we spoke to, Leslie is grateful for HUSKY, but she doesn’t want to be on a public program. She wants to pay. She just needs some help “bridging the gap right now.” She just needs a “temporary cushion until things change for us.”

Without HUSKY, she just pays for care that she absolutely needs out of her own pocket. But “we never get ahead.”

In trying to help her son and get help for herself, she said, “people take advantage because they think they know more than you do.” “They keep saying the problem will be fixed, but it never is.” “We always paid our own way. We never wanted anything from anyone.” “I don’t go out and milk the system. We aren’t like that.” On losing HUSKY herself, “If I can’t care for myself, how am I supposed to care for David.” “No one explains things. It’s not like coverage through work where the HR person sits you down and tells you everything. How can you comply with rules you never see and are never explained to you?” “I am a college-graduate. I don’t know how other people figure it out.” “It’s mind-boggling, the details you have to work out to get care.”

“The whole health care system is so demeaning. It’s unfair. They attack you for being a good mother.” “Whoever developed this plan didn’t understand the impact on real people.” “What happens to my son if something happens to me? Will those doctors or those people at the state take him in?” “We can never catch up” “All those years we sacrificed to get ahead, and now it’s all lost.”

“It’s scary not to have insurance. If something happens to me, what will happen to my son?” “The people who are supposed to be helping us, are really hurting us.” “Such a waste of money” “I used to have 90 sick days saved up at work – I never used them. I was contentious. Now, if I am out sick, I don’t get paid.” “Getting active in advocacy made a big difference. Now my calls get answered.” From Leslie’s statement in appealing her HUSKY cut “I have been a full-time caretaker, advocate and case worker for my son. The impact of what has happened to our child also had an impact on both my husband and me, similar to post—traumatic stress. We are on the edge of burnout.” “Caring for a child without respite, without backup relief or in home services takes a toll on the physical and emotional health of parents and other family members.” “They treat me like I am crazy. Eventually they will drive me crazy.”