helping families in the journey with a child with special needs

Parent-To-Parent Support

Connecting Families with Children with Special Healthcare Needs to

Support and Information

Why do we need each other?

• Because one person can’t know it all.

• Our children need our voices!

• The journey is a WHOLE lot better if you don’t go it alone.

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.

What is it that you need most to feel equipped to meet your child's needs?

61.9%

42.1%

44.4%

0.0%

10.0%

20.0%

30.0%

40.0%

50.0%

60.0%

70.0%

Information Emotional Support Education (workshops,trainings, etc.)

What is your primary way of getting information you need for your child?

32.8%39.6%

49.3%

8.2%

28.4%

0.0%

10.0%

20.0%

30.0%

40.0%

50.0%

60.0%

My child's doctor Other parents Internet School Serviceproviders (EarlyInterventionist,

ServiceCoordinator,

etc.)

How often does your child's doctor direct you to resources/support to assist you in caring for

your child?

11.35% 11.35%

33.33%

25.53%

18.44%

Do you ever feel isolated/alone in your journey with your child?

15 15

74

31

5

0

10

20

30

40

50

60

70

80

Never Almost Never Sometimes AlmostAlways

Always

Series1

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 sameA new journey………….

Our Emotions

Shock!!!!DenialAngerSadness

GuiltConfusion Loneliness

Hope

Peace

LOVE

Raising our children

Going to Take a Village

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.

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.

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)

We now have a staff member who is aparent of two boys (twins) with a

genetic disorder that speaks Spanish. She also has vast experience with the military.

• Habla Espanol

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.

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)

Kid Connection

Caring for our children birth to three

What is BabyNet?What is the Family Partner Program?400 Parent-to-parent matches last year

Regional Parent Partners

Partnering with DHEC, Maternal and Child Health, Children with Special Health Care Needs Division.

Parent Partner for all DHEC regions.

One Parent At A Time

Parents of a child with special health care needs

Trained on community and statewide resourcesProvides telephonic or home visit supportBirth to 18 years oldIntensive support:

Medical and dental home Caring for yourself

Care Notebook Medicaid/Insurance

Resources

Asthma is the Leading Cause of IllnessFor our Children in SC

Project Breathe EasyTrained parents

helping parentsHome Visits, asthma

notebook, care coordination with physician, pillow and/or mattress encasement

Better health outcomes for children.

•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.

At Cribside… Trained parents are visiting parents at

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 that is provided.

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.

The SC Information and Support Connection for

Parents with Children With Special Healthcare Needs and the

Professionals who Serve them