About Participating

Frequently Asked Questions:

1. What should I do if I decide to participate in the project?
2. How did you get my name? 
3. What does participating in the Program involve? 
4. What do I get for participating?
5. Do I have to participate? 
6. Do I need to finish the screening surveys during a specific time frame?
7. How will you protect my privacy?
8. Can't you get this information from my doctor or my hospital records? 
9. What if I can't remember the information you're asking me?
10. What will I be asked in the screening questionnaires? 
11. I cannot find the materials you sent me - how do I get another copy of the questionnaires and other materials you sent me?
12. Will I get my child's results?
13. What happens if you identify a developmental delay in my child?
14. What if I do not live in Upstate New York?

About Participating:

1. What should I do if I decide to participate in the project?

You can call our office at  1-888-870-0247  to let us know you are interested, or email us at upstatekids@health.state.ny.us. Otherwise, an Upstate KIDS team member will call you in about 2 weeks to give you a general overview of the program, confirm your contact information, and discuss your interest in participating in Upstate KIDS.  TOP

2. How did you get my name?

Your name was obtained through the registration of your child's birth with the New York State Department of Health.  TOP 

3. What does participating in the Program involve? 

An initial telephone contact verifying your contact information, followed by completion of an initial set of written questions on your reproductive and medical history (these will take about 40-60 minutes to complete) and your child's development through 4 months of age. We will also ask you to complete periodic shorter surveys when your child is 8, 12, 18, 24, 30, and 36 months old. These will include ASQs, a short reporting form documenting your child's most recent visit to his/her pediatrician, an autism screening, and a health journal to record information during your child's routine pediatric check-ups (each of which will take about 15 minutes to complete).  TOP 

4. What do I get for participating?

When we send moms the first Upstate KIDS screening packet (when their newly born child(ren) is about 4 months old), we include a gift check which we give to moms as a way to thank them for considering participating in Upstate KIDS.  The amount of the check is determined by the number of newly born children a mom has -- moms with one baby will be sent $20, moms with twins will be given $40, and moms with triplets will be sent $60.  As a thank you gift, moms who decide to enroll in Upstate KIDS will be sent an additional $10 check after we receive their completed 4 month screening questionnaires. With each subsequent screening packet sent to moms, another small gift will be included. 

If we identify developmental delays in your child we will help refer your child for early intervention care and services. Although the program results may not benefit you or your family directly if no developmental delays are identified in your child, many women feel good about helping to find causes of growth and/or developmental delays.  TOP

5. Do I have to participate?

No. If you do opt to not participate, your decision will not affect health care services you or your family may receive apart from Upstate KIDS.  TOP

6. Do I need to finish the screening surveys during a specific time frame? 

Though not all of our questionnaires are time sensitive, the ASQ must be completed within one month of the age the questionnaire is designed to assess, to ensure the accuracy of our assessment of your child.  TOP

7. How will you protect my privacy?

All information you give us during the initial interview and subsequent surveys and other forms completed will be kept confidential. This means:

· Your answers will not be seen by anyone not working on the screening program.

· Your identity is secret. We will never use your name or your child's name in any report or publication.

· Information about you will not be shared with anyone not working on the screening program, including insurance companies or other government agencies.  TOP

8. Can't you get this information from my doctor or my hospital records? 

No. Most doctors don't routinely ask about the topics we are studying. You are the only one who can supply the information we need.  TOP

9. What if I can't remember the information you're asking me? 

It's okay to say so. We want you to answer as accurately and honestly as possible.  TOP

10. What will I be asked in the screening questionnaires? 

The questionnaires will cover a wide range of topics, including:

· Questions surrounding your child's growth and development

· Your recent pregnancy

· Any past pregnancies

· Your health

· Prescription and non-prescription drugs you have taken

· Your diet

· Your family background

· Your work and hobbies

· Your lifestyle  TOP 

11. I cannot find the materials you sent me - how do I get another copy of the questionnaires and other materials you sent me? 

You can print them from our website directly, or contact us at Upstate KIDS via email or phone, and we will provide you with additional copies.  TOP

12. Will I get my child's results?

Absolutely. If there are any important results from your child’s screening, you will be notified by a member of the Upstate KIDS project, as early as possible.  TOP

13. What happens if you identify a developmental delay in my child? 

You will be contacted by a member of the Upstate KIDS project team. We can refer you to the New York State Early Intervention Program which can provide you with all of the resources necessary, free of charge, to assist you with your child's needs.  TOP

14. What if I do not live in upstate NY? 

Selected families who gave birth in New York State, outside of New York City, are eligible to participate in Upstate KIDS as long as they enroll in the program while living in New York State.  If, after you enroll, you move out of state; we are happy to have you continue participating in Upstate KIDS.  TOP