Tuesday, July 15, 2008

Family Stories needed on financial hardship

Family Voices recognizes that many of our members struggle with the financial hardships of raising a child with special health care needs. If you are interested in participating in the following project, please follow the instructions below:

Case Studies on Family Financial Hardship


Background
The Catalyst Center at the Boston University School of Public Health has a
grant from the Maternal and Child Health Bureau at the Health Resources
and Financing Administration (HRSA) to help ensure that “all children and
youth with special health care needs will have adequate health insurance
and financing to meet their needs.” As part of our work, we are collecting
stories on financial hardships families have had in caring for a child
with special needs. We will use these stories to show the importance of
improving insurance coverage or other resources that will benefit children
and their families. The stories will include information about:
· The child’s medical condition;
· The parents’ work status; and
· How the family copes with the financial responsibility of caring for a
child with special needs.

How will this work?
If your story is selected, we will work with you to develop it, first
through your own written words and then through follow up questions that
we may ask. We will draft a case study from your story and send it back to
you for your approval or changes.

How will the stories be used?
We intend to include these case studies in written materials that will be
printed in hard copy and posted on our website, and sent to policy-makers,
health care providers, families, advocates, legislators and other
interested parties. We may not use all of the case studies in all of the
materials produced.
If you would like to share your story with us and others in this way, we
ask that you consider the following questions carefully and provide us
with whatever consent you feel comfortable with.

Thank you!
Meg Comeau, Project Director

Consent Form
If you ever wish to change your responses on this form, you may contact
Meg Comeau at the Catalyst Center (617) 426-4447, ext 27 or
mcomeau@bu.edu. You may keep copy of this form for your records.

A “yes” check means I will allow the Catalyst Center at the
Boston University School of Public Health to use my story in the way
described below:
Yes _No_ (for all spaces below)

_____ _____The Catalyst Center may include my story in written materials that
will be sent to policy-makers, providers, families, advocates and other
interested parties.

_____ _____ I agree to allow the Catalyst Center to display my story on
its website.

_____ _____ I agree to allow the Catalyst Center to distribute my story to
funding agencies.

_____ _____ The Catalyst Center may tell my story at academic/professional
conferences.

_____ _____ The Catalyst Center may use my real name in its materials.

_____ _____The Catalyst Center may contact me to ask follow-up questions.

_____ _____ The Catalyst Center may use my child’s real name in its
materials.

_____ _____ The Catalyst Center may include the name of my state in its
materials.

_____ _____ The Catalyst Center may include the name of my city/town in
its materials.

_____ _____ The Catalyst Center may use my photograph with the story.

_____ _____ The Catalyst Center may use a photograph of my child with the
story.

If you do not want the Catalyst Center to use real names or locations, you
may suggest an alternative:
My name:____________________________ My child’s
name:______________________________
My location:__________________________________
By signing here, you agree to the terms you have checked above.
___________________________ ________ ______________________ __________
(parent signature) (date) (child signature if applicable) (date)
________________________________ ___________
(witness signature) (date)

Family Stories on Financial Hardship

Thank you for sharing your family story with the Catalyst Center. Below
are some questions that will help you get started. Tell us whatever you
think is important. We want to know your family’s story in your own words.
Please don’t worry about getting every word exactly right--spelling,
technical terms, or length of the story are not critical at this point.
Instead, we hope you will try to capture the financial impact of your
child’s medical needs on your family in every-day language and in
every-day ways. In the next phase of our project we will work with a small
group of families to finish their stories for possible use in future
Catalyst Center publications. Our goal is to collect a range of family
stories that can show the importance of adequate insurance coverage, and
the need for other financial resources to help families care for children
with special health care needs. By sharing your story, you are helping to
support this
research and contributing to the national effort to find real solutions to
these problems in the future. We will collect family stories until August
15, 2008.


A word about Children with Special Health Care Needs: This phrase includes
a broad group of children with a wide range of needs including: physical
disabilities, developmental, behavioral or emotional conditions or chronic
illness. It includes children with many different diagnoses, but all
require health or related services beyond those needed by children
generally. A national survey has estimated that 13% of children in the
United States meet this definition.


Basic Information about My Child and Our Family

My child’s:
1. First name ____________________________________________________________
Boy Girl
2. Age _______
3. Special Health Care Needs
_______________________________________________
____________________________________________________________________

Our Family:
1. My name_____________________________________________________________
2. City/State_____________________________________________________________
3. Adults living with the
family________________________________________________
a. Their employment status__________________________________________
4. Children living with the
family______________________________________________
5. Contact information (choose one or both)
a. Telephone number_______________________________________________
b. E-mail address__________________________________________________


Financial Impact of My Child’s Medical Needs

1. Have you cut down your work hours, taken a lower-paying job and had to
stop working because you needed to care for a child with special health
care needs?
________________________________________________________________________
________________________________________________________________________

1. Are there things your child needs that are not covered by health
insurance, that you pay for out-of-pocket?
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________

1. Have you ever had to skip getting care or services for your child due
to medical debt you already have, or your fear of getting more into debt?
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________

1. Have you ever had to go without or cut down on spending for housing,
food, education or health care for other family members due to medical
debt?
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________


Tell us your story… in your own words

Please tell us about an experience in your family when your child’s
medical needs and the costs of his/her care had a powerful financial
impact for you or your family. You can write on this form, or attach a
separate piece of paper that addresses these questions.

§ What specific things do you remember about your child and family at that
time?
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________

§ What did this situation mean for you?
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________


§ How did you feel at the time?
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________

§ When you think about this situation now, can you see any long term
impacts for your family?
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________

§ Were there any solutions available to your family that made a
difference?
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________
________________________________________________________________________

Please send this completed form including any additional pages with your
story, and the signed consent form to:
Meg Comeau, Project Director
Catalyst Center
Health & Disability Working Group
Boston University School of Public Health
374 Congress Street, Suite 502
Boston, MA 02210

Questions? Do not hesitate to contact Meg at the Catalyst Center:
Email: mcomeau@bu.edu -- Telephone: (617) 426-4447, ext. 27

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