J.Richards presentation given at the 2012 South Carolina Home Visiting Summit

1. Parent-To-Parent Support
Connecting Families with Children
with Special Healthcare Needs to
Support and Information

2. Why do we need each other?
• The journey is a WHOLE lot better if you don’t go it alone.
• Because one person can’t know it all.
• Our children need our voices!

3. Together…
We can dream about what we want for our children.
When one falls down and feels like they just can’t get
up, someone can lift you back up.
We become stronger and more united.

4. What is it t hat y ou need most t o f eel equipped t o meet y our child' s
needs?
70.0%
61.9%
60.0%
44.4%
50.0%
42.1%
40.0%
30.0%
20.0%
10.0%
0.0%
Information Emotional Support Education (workshops,
trainings, etc.)

5. What is y our pr imar y w ay of get t ing infor mat ion y ou need for y our
child?
60.0%
49.3%
50.0% 39.6%
40.0% 32.8%
28.4%
30.0%
20.0%
8.2%
10.0%
0.0%
My child's doctor Other parents Internet School Service
providers (Early
Interventionist,
Service
Coordinator,
etc.)

6. How often does your child's doctor direct you to
resources/support to assist you in caring for your
child?
33.33%
25.53%
18.44%
11.35% 11.35%
r
er
ys
ve
es
s
ay
ev
wa
Ne
im
lw
tN
et
Al
tA
m
os
So
os
m
Al
m
Al

7. Do you ever feel isolated/alone in your
journey with your child?
80 74
70
60
50
40 Series1
31
30
20 15 15
10 5
0
Never Almost Never Sometimes Almost Always
Always

8. Different Ways and Different Times
Parents learn in many different ways and different
times about their child’s disability or healthcare
needs.
Many of the emotions are the same
A new journey………….

9. Our Emotions
Shock!!!!
Denial
Anger
Sadness
Guilt
Confusion
Loneliness

10. Hope
Peace
LOVE

11. Raising our children
Going to Take a Village

12. Become part of our village and why?
Family Connection of SC (FCSC) is the
information and support connection for
families with children with special
healthcare need.

13. FCSC is a Link to the Nation
• Our state’s Family-to-Family Health
Information and Education Center – as
appointed by the Maternal and Child Health
Bureau.
• SC Family Voices – A national advocacy
group devoted to improved public and
private policies and trusted resource on
healthcare.

15. What is on the other end of the
line?
• A Father – who has taught nationally about the
importance of fatherhood in the child’s life with
special needs.
• A mother who had NICU twins and has been in
the hospital more times than you can count with
her child. – she is trained to assist on
Medicaid/TEFRA calls. We teach parents how to
apply and how to appeal. (Partnership with
DHHS)

16. • Habla Espanol
We now have a staff member who is a
parent of two boys (twins) with a
genetic disorder that speaks Spanish.
She also has vast experience with the
military.

17. What a parent gets by making a
connection:
• Parent-to-Parent Support
(over 600 trained Support
Parents)
• You can become one too!
• 1800 parents were
matched 1:1 last year.

18. Parents are getting Connected
• Support Groups (over 40 statewide)
• 1700 Parents got connected in Parent Connections
(i.e. support groups)
• Over 700 children received care so that there parents could
learn new information for better health outcomes.
• Parents and professionals come together for the Hopes and
Dreams Conference each year (partnering SDE, DHEC,
DDSN)

20. Kid Connection

21. Caring for our children birth to three
What is BabyNet?
What is the Family Partner Program?
400 Parent-to-parent matches last year

22. Regional Parent Partners
Partnering with DHEC,
Maternal and Child Health,
Children with Special
Health Care Needs
Division.
Parent Partner for all
DHEC regions.

23. One Parent At A Time
Parents of a child with special health care needs
Trained on community and statewide resources
Provides telephonic or home visit support
Birth to 18 years old
Intensive support:
 Medical and dental home
 Caring for yourself
 Care Notebook
 Medicaid/Insurance
 Resources

24. Asthma is the Leading Cause of Illness
For our Children in SC
Project Breathe Easy
Trained parents helping
parents
Home Visits, asthma
notebook, care
coordination with
physician, pillow and/or
mattress encasement
Better health outcomes
for children.

37. •Be a part of something amazing and bring change to your
community!
•Volunteer to be a Navigator Team Leader in your community.
• We are looking to give free leadership training to individuals
who want to start a Navigator Team.

38. Trained parents are visiting parents at
At Cribside…cribside to provide support that can only
be understood by someone who has
“been there.”
In the family centered
care arena, the saying
goes “the way care is
provided is as
important, if not more
important, than the
actual medical care

39. Strong family-professional partnerships:
Families and providers make decisions together with the child
participating as much as possible.
Administrative policies and practices support long-term
relationships between families and providers.
Families help professionals develop and use tools that
measure quality of care and family satisfaction.
Families serve on statewide and local public and private
policymaking boards.

40. The SC Information and Support
Connection for
Parents with Children With
Special Healthcare Needs and the
Professionals who Serve them