25% of parents with Special Needs children have to significantly reduce hours or stop working

March 15, 2008 Kyron No Comments

25% of parents with Special Needs children have to significantly reduce their role at work or stop working.

A ‘recent’ survey (2005-2006) by the Health Resources and Services Administration which is a part of the US Department of Health and Human Services found that 14% of  all US children had special needs. Children with Special Needs was defined in this survey as as having or being at risk for:

chronic physical, developmental, behavioral, or emotional conditions that have lasted or are expected to last at least 12 months.

In this report there are 6 ‘Core Outcomes: Key Measures of Performance’

  • Families of children and youth with special health care needs partner in decision making at all levels and are satisfied with the services they receive;
  • Children and youth with special health care needs receive coordinated ongoing comprehensive care within a medical home;
  • Families of CSHCN have adequate private and/or public insurance to pay for the services they need;
  • Children are screened early and continuously for special health care needs;
  • Community-based services for children and youth with special health care needs are organized so families can use them easily;
  • Youth with special health care needs receive the services necessary to make transitions to all aspects of adult life, including adult health care, work, and independence

The reality is that on an overall basis we are failing this very prevalent population.  When you consider that to adequately care for our special needs children that ¼ of the population must significantly reduce or stop working all together to care for their children – something is just wrong.

I have been and continue to be one of that 25% who left work in order to care for my child. Could I have continued to work? Possibly. Let me see, I’m sorry boss person, I need to leave work on Monday from 9am-noon and Tuesday from 2:30 until close and Wednesday from 9am until 1:00pm and on Thursday from 3:00 until close and oh Friday – I can actually work a full day. And that is just this week. I’ll get you next week’s schedule by Wednesday. No problem? Awesome. Ya right. It’s why I’m at home now.

I held a good job, and it provided well for my daughter and myself. It’s actually the reason I’m in Georgia. Unfortunately, as Katherine’s needs escalated, my ability to maintain my job became increasingly difficult. It’s hard to be at work when you know your child is in a hospital and you aren’t there for them. It’s hard to explain to your boss why you need to leave a couple of hours early so that you can miss the traffic so you can actually make it to the hospital. And that’s just in a crisis situation – the day to day is just overwhelming some weeks. Four years later I’m doing better. With Katherine’s waiver providing some secure support, I might be able to go back to work part time at least but I haven’t reached that comfort level yet and with her brother here that’s kind of stalled that whole conversation. It’s amusing to me though the questions they ask for impact on family

  • CSHCN (Children with Special Health Care Needs) whose families pay $1,000 or more out of pocket in medical expenses per year for the child
  • CSHCN whose conditions cause financial problems for the family
  • CSHCN whose families spend 11 or more hours per week providing or coordinating the child’s health care
  • CSHCN whose conditions cause family members to cut back or stop working

Let’s see – you’re a single parent how do you think you’re going to do cutting back or stopping work while you have a special needs child? Can you say welfare? Can you say that this is nuts!! Honestly though some of these numbers seem insanely optimistic in terms of delivery of service. In any event it’s a report you should check out. The links below provide you with access to the Summary as well as the State by State data so you can see how your state did. There is a PDF available of the report. If you don’t already have it download your free copy of Adobe Acrobat reader to access the PDF. You’ll never be sorry to have that handy gadget piece of software – indispendible!

Summary of report
State by State data – see how your state did
National Survey of Children with Special Health Care Needs Chartbook
Free Acrobat reader

The reality is no matter how rosy a picture they try to paint there are far too many children and families being failed by this system. They deserve better. We deserve better. We need to tell those with the power to do something to do it.

Related posts:

  1. The Ten Commandments for Parents of Special Needs Children

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