The System- In the Patient's Words

The following is written by a parent of a child with special healthcare needs. I was given permission by this parent to publish her story on this blog (after de-identifying the family). The story illustrates the importance of the system in which care is provided. It seems more and more apparent to me that we can be the best providers we can be, but if the system doesn't work for our patients and their families, we won't achieve desired outcomes (and our families will continue to suffer the consequences). Yet another reason that IHI's patient-centered approach is so important!

My name is Jaclyn and I have been a lifelong resident of Connecticut and I’m a parent raising a special needs child. My daughter was born prematurely at UCONN Medical. In October 2003 my daughter was diagnosed with Cerebral Palsy and is currently wheelchair bound. For me, January 14th 2009 makes 6 years of being unemployed.

My daughter is totally dependent on me to carry her up and down the stairs for her baths and to be put to bed and to get her ready for school and other activities. She attends kindergarten and being that I don’t have ramps at either front or back doors, I have to roll her down the steps to get her on the bus. Her movements are so sporadic, I often will have random bruises such as a swollen lip from her hitting me in my face. I use to receive home health aid assistance 40 hrs a week and those were cut to 10 hrs a week, which is not efficient help for me caring for her. I don’t have any choices but to financially depend on state assistance and the disability I collect for my daughter. Although, under valid circumstances, I often feel degraded by the DSS workers. I have called nearly every daycare center/childcare provider in and around my town only to be told my daughter doesn’t qualify for daycare because she is a liability, she’s not potty trained or there is no qualified staff to take care of children like mine. I have called the senator who services my district, the mayor, the board of education, the United Way and spoke with the principle at her school to ask for help in finding a qualified daycare that will accept her. Those leads did not pan out and I finally given up when a coordinator at 211 info line explained to me that Connecticut doesn’t have daycares for special needs children.

I never wanted to quit my job but it was a disheartening sacrifice I had to make. If it were possible for me to work, I wouldn’t have anyone to place her on the bus or have anyone to receive her after school. The easy part is to go to work during the hours she is in school but quite often the school calls me to come pick her up because she may have had an accident or she’s not feeling well enough to stay. I also have to consider weather delays, shut downs, early dismissals and even her summer vacation.

Bottom line, I have virtually no assistance for my daughter or myself. My mother is the only one who will pitch in when she can but she is 64 years old and still working for herself. Placing my daughter in a group home would literally kill me. I love her more than I love myself and will fight and sacrifice for her till my last day.