Innovative Approaches Community Survey

Page One
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Innovative Approaches is conducting this survey to learn more about the experiences of families of children and youth with special health care needs. Your response will help us improve services for families of children and youth with special health care needs in our community. While completing this survey, please answer the questions about your oldest child who has special health care needs. Thank you for participating in this anonymous survey!
A child with special health care needs is one who has a condition expected to last longer than 12 months, and requires more care than is usual for most children of the same age. They may use more medical, mental health or educational services. Some children have conditions that rarely affect them, or only affect them a little. Others are significantly affected by their conditions.
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2. Please mark the health conditions that your child currently has. Please answer based on your oldest child with special health care needs.
3. How old is your oldest child with special health care needs?
4. How do you pay for health services for your oldest child with special health care needs?
Goal 1: Families are partners in shared decision-making for child’s optimal health.
A health care provider can be a family doctor, specialist, nurse, therapist, or other professional.

"Always" is every time. "Usually" is regularly, most of the time. "Sometimes" is now and then. "Never" is not on any occasion.

How do your child's health care providers work with you to make decisions about his or her health care services and treatment? During the past 12 months…
A health care provider can be a family doctor, specialist, nurse, therapist, or other professional. "Always" is every time. "Usually" is regularly, most of the time. "Sometimes" is now and then. "Never" is not on any occasion. How do your child's health care providers work with you to make decisions about his or her health care services and treatment? During the past 12 months…Always Usually Sometimes Never Don't know
1. How often did your child's health care providers discuss with you the choices to consider for your child's health care or treatment?
2. How often did they make it easy for you to ask questions or raise concerns?
3. How often did they consider and respect what health care and treatment choices you thought would work best for your child?
Goal 2: Families receive coordinated, ongoing, comprehensive care within a medical home.

A medical home is where a child receives health care when it's not an emergency situation.

6. Does your child have at least one personal doctor or nurse?
Family-centered care means that your child’s health care providers spend enough time with you, listen well, and are sensitive to your family values and customs. They provide needed information and make your family feel like a partner in your child’s care.
7. How often did you receive family-centered care in the previous 12 months?
8. Have you been able to get referrals when needed?
Care coordination means your family got help coordinating your child’s health care. It means health care providers communicate with each other about your child’s treatment. They also communicate with the school/daycare and others who serve your child.
9. How often did your family receive care coordination that worked well for you in the previous 12 months?
Goal 3: Children are screened early and continuously for special health care needs.
Goal 4: Families can easily access community-based services.
During the past 12 months did you have any difficulties or delays getting services for your child(ren) because…
During the past 12 months did you have any difficulties or delays getting services for your child(ren) because…YesNo
13. …he or she was not eligible for the services?
14. …the services he or she needed were not available in your area
15. …there were waiting lists, backlogs, or other problems getting appointments?
16. …of issues related to cost?
17. …you had trouble getting the information you needed?
18. During the past 12 months did you have difficulties or delays for any other reason?
19. During the past 12 months, how often have you been frustrated in your efforts to get services for him or her?
Goal 5: Youth with special health care needs receive the services necessary to make appropriate transitions to adult health care, work, and independence.
For youth with special health care needs, ages 12 and older, the youth’s doctor has discussed...

If your child is 11 or younger, please select "Does not apply".
For youth with special health care needs, ages 12 and older, the youth’s doctor has discussed...If your child is 11 or younger, please select "Does not apply".YesNoDoes not apply
21. …transitioning to doctors who treat adults.
22. …changing health needs as youth becomes an adult.
23. …how to maintain health insurance as an adult.
24. The youth’s doctor encourages the youth to take age‐appropriate responsibility for managing his or her own health needs.