SlideShare a Scribd company logo
Parent-To-Parent Support

Connecting Families with Children
 with Special Healthcare Needs to
     Support and Information
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!
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 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.)
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.)
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
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
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………….
Our Emotions

Shock!!!!
Denial
Anger
Sadness

Guilt
Confusion
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.
Helping Families in the Journey with a Child with Special Needs
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)
• 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.
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)
Helping Families in the Journey with a Child with Special Needs
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 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
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.
Helping Families in the Journey with a Child with Special Needs
Helping Families in the Journey with a Child with Special Needs
Helping Families in the Journey with a Child with Special Needs
Helping Families in the Journey with a Child with Special Needs
Helping Families in the Journey with a Child with Special Needs
Helping Families in the Journey with a Child with Special Needs
Helping Families in the Journey with a Child with Special Needs
Helping Families in the Journey with a Child with Special Needs
Helping Families in the Journey with a Child with Special Needs
Helping Families in the Journey with a Child with Special Needs
Helping Families in the Journey with a Child with Special Needs
Helping Families in the Journey with a Child with Special Needs
•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.
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
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

More Related Content

Viewers also liked

How to Start, Enhance, and Maintain a Support Group
How to Start, Enhance, and Maintain a Support GroupHow to Start, Enhance, and Maintain a Support Group
How to Start, Enhance, and Maintain a Support Group
keasme
 
Unit 216 working with participants with disabilities in sport and active leisure
Unit 216 working with participants with disabilities in sport and active leisureUnit 216 working with participants with disabilities in sport and active leisure
Unit 216 working with participants with disabilities in sport and active leisure
ProdecEducation
 
Bigby et al. identifying good group homes for people with severe and profound...
Bigby et al. identifying good group homes for people with severe and profound...Bigby et al. identifying good group homes for people with severe and profound...
Bigby et al. identifying good group homes for people with severe and profound...
Christine Bigby
 
Working In Partnership With Students - Session Seventeen
Working In Partnership With Students - Session SeventeenWorking In Partnership With Students - Session Seventeen
Working In Partnership With Students - Session Seventeen
Mike Blamires
 
Kol ami presentation 9.12.10.2
Kol ami presentation 9.12.10.2Kol ami presentation 9.12.10.2
Kol ami presentation 9.12.10.2
Tampa Jewish Family Services
 
Final dimensions of culture in supported accommodation services for people wi...
Final dimensions of culture in supported accommodation services for people wi...Final dimensions of culture in supported accommodation services for people wi...
Final dimensions of culture in supported accommodation services for people wi...
Christine Bigby
 
Supporting inclusion Bigby & Wiesel workshop WA ASID Oct 2015
Supporting inclusion Bigby & Wiesel workshop WA ASID Oct 2015Supporting inclusion Bigby & Wiesel workshop WA ASID Oct 2015
Supporting inclusion Bigby & Wiesel workshop WA ASID Oct 2015
Christine Bigby
 
Training Manual on the Human Rightsof persons with Disability
Training Manual on the Human Rightsof persons with Disability Training Manual on the Human Rightsof persons with Disability
Training Manual on the Human Rightsof persons with Disability
foreman
 
Equality week 2
Equality week 2Equality week 2
Equality week 2
HCEfareham
 
NCV 2 Early Childhood Development Hands-On Support Module 4
NCV 2 Early Childhood Development Hands-On Support Module 4NCV 2 Early Childhood Development Hands-On Support Module 4
NCV 2 Early Childhood Development Hands-On Support Module 4
Future Managers
 
Shg2007
Shg2007Shg2007
Shg2007
saravanan93
 
the history of special education
the history of special education the history of special education
the history of special education
alshaundra everett
 
U1.1 lesson3[lo4,lo5]
U1.1 lesson3[lo4,lo5]U1.1 lesson3[lo4,lo5]
U1.1 lesson3[lo4,lo5]
HCEfareham
 
Children & person with special needs
Children & person with special needsChildren & person with special needs
Children & person with special needs
Nik Ronaidi
 

Viewers also liked (14)

How to Start, Enhance, and Maintain a Support Group
How to Start, Enhance, and Maintain a Support GroupHow to Start, Enhance, and Maintain a Support Group
How to Start, Enhance, and Maintain a Support Group
 
Unit 216 working with participants with disabilities in sport and active leisure
Unit 216 working with participants with disabilities in sport and active leisureUnit 216 working with participants with disabilities in sport and active leisure
Unit 216 working with participants with disabilities in sport and active leisure
 
Bigby et al. identifying good group homes for people with severe and profound...
Bigby et al. identifying good group homes for people with severe and profound...Bigby et al. identifying good group homes for people with severe and profound...
Bigby et al. identifying good group homes for people with severe and profound...
 
Working In Partnership With Students - Session Seventeen
Working In Partnership With Students - Session SeventeenWorking In Partnership With Students - Session Seventeen
Working In Partnership With Students - Session Seventeen
 
Kol ami presentation 9.12.10.2
Kol ami presentation 9.12.10.2Kol ami presentation 9.12.10.2
Kol ami presentation 9.12.10.2
 
Final dimensions of culture in supported accommodation services for people wi...
Final dimensions of culture in supported accommodation services for people wi...Final dimensions of culture in supported accommodation services for people wi...
Final dimensions of culture in supported accommodation services for people wi...
 
Supporting inclusion Bigby & Wiesel workshop WA ASID Oct 2015
Supporting inclusion Bigby & Wiesel workshop WA ASID Oct 2015Supporting inclusion Bigby & Wiesel workshop WA ASID Oct 2015
Supporting inclusion Bigby & Wiesel workshop WA ASID Oct 2015
 
Training Manual on the Human Rightsof persons with Disability
Training Manual on the Human Rightsof persons with Disability Training Manual on the Human Rightsof persons with Disability
Training Manual on the Human Rightsof persons with Disability
 
Equality week 2
Equality week 2Equality week 2
Equality week 2
 
NCV 2 Early Childhood Development Hands-On Support Module 4
NCV 2 Early Childhood Development Hands-On Support Module 4NCV 2 Early Childhood Development Hands-On Support Module 4
NCV 2 Early Childhood Development Hands-On Support Module 4
 
Shg2007
Shg2007Shg2007
Shg2007
 
the history of special education
the history of special education the history of special education
the history of special education
 
U1.1 lesson3[lo4,lo5]
U1.1 lesson3[lo4,lo5]U1.1 lesson3[lo4,lo5]
U1.1 lesson3[lo4,lo5]
 
Children & person with special needs
Children & person with special needsChildren & person with special needs
Children & person with special needs
 

Similar to Helping Families in the Journey with a Child with Special Needs

Autism: A Guide for Parents and Carers Following Diagnosis
Autism: A Guide for Parents and Carers Following Diagnosis Autism: A Guide for Parents and Carers Following Diagnosis
Autism: A Guide for Parents and Carers Following Diagnosis
ASDInfoWales
 
Choc powerpoint
Choc powerpointChoc powerpoint
Choc powerpoint
Miriam Ochoa
 
Agency analysis sw 180
Agency analysis sw 180Agency analysis sw 180
Agency analysis sw 180
martha5lozano5
 
Angels foster care of santa barbara
Angels foster care of santa barbaraAngels foster care of santa barbara
Angels foster care of santa barbara
Doina Mocanu
 
Stanfield Town And Gown
Stanfield Town And GownStanfield Town And Gown
Stanfield Town And Gown
Todd Stanfield
 
Counseling Pregnant Teens
Counseling Pregnant Teens Counseling Pregnant Teens
Counseling Pregnant Teens
natalie S
 
Force powerpoint final april 29 2013
Force powerpoint final april 29 2013Force powerpoint final april 29 2013
Force powerpoint final april 29 2013
FORCESociety
 
What makes a service family-centred? Reflections and Perspectives using MPOC ...
What makes a service family-centred? Reflections and Perspectives using MPOC ...What makes a service family-centred? Reflections and Perspectives using MPOC ...
What makes a service family-centred? Reflections and Perspectives using MPOC ...
Olaf Kraus de Camargo
 
Lost? Finding Your Medical Home!
Lost? Finding Your Medical Home!Lost? Finding Your Medical Home!
Lost? Finding Your Medical Home!
2011 Juvenile Arthritis Conference
 
Teen Pregnancy Powerpoint
Teen Pregnancy PowerpointTeen Pregnancy Powerpoint
Teen Pregnancy Powerpoint
marcginsberg
 
FAW Spring 2015
FAW Spring 2015FAW Spring 2015
FAW Spring 2015
Jenna Czaplewski
 
LIONS QUEST1
LIONS  QUEST1LIONS  QUEST1
LIONS QUEST1
Lions Clubs India
 
Strengthening Families in Child Welfare Professional Development
Strengthening Families in Child Welfare Professional DevelopmentStrengthening Families in Child Welfare Professional Development
Strengthening Families in Child Welfare Professional Development
k.stepleton
 
2010-2011 Denton ISD Parent Survey
2010-2011 Denton ISD Parent Survey2010-2011 Denton ISD Parent Survey
2010-2011 Denton ISD Parent Survey
Lantana, Texas
 
TEDxTallahassee 2015
TEDxTallahassee 2015TEDxTallahassee 2015
TEDxTallahassee 2015
Mary Kay Keller, MPA, PhD
 
The Florida Poll
The Florida PollThe Florida Poll
The Florida Poll
childrensmovementflorida
 
Parent and child fostering guide.pdf
Parent and child fostering guide.pdfParent and child fostering guide.pdf
Parent and child fostering guide.pdf
F5 Foster Care
 
Single parent
Single parentSingle parent
Single parent
Diana Mazhit
 
Lund Newsletter
Lund NewsletterLund Newsletter
Lund Newsletter
StaciAnne Grove
 
Mgd 120 foster care ppt
Mgd 120 foster care pptMgd 120 foster care ppt
Mgd 120 foster care ppt
sstewart1081
 

Similar to Helping Families in the Journey with a Child with Special Needs (20)

Autism: A Guide for Parents and Carers Following Diagnosis
Autism: A Guide for Parents and Carers Following Diagnosis Autism: A Guide for Parents and Carers Following Diagnosis
Autism: A Guide for Parents and Carers Following Diagnosis
 
Choc powerpoint
Choc powerpointChoc powerpoint
Choc powerpoint
 
Agency analysis sw 180
Agency analysis sw 180Agency analysis sw 180
Agency analysis sw 180
 
Angels foster care of santa barbara
Angels foster care of santa barbaraAngels foster care of santa barbara
Angels foster care of santa barbara
 
Stanfield Town And Gown
Stanfield Town And GownStanfield Town And Gown
Stanfield Town And Gown
 
Counseling Pregnant Teens
Counseling Pregnant Teens Counseling Pregnant Teens
Counseling Pregnant Teens
 
Force powerpoint final april 29 2013
Force powerpoint final april 29 2013Force powerpoint final april 29 2013
Force powerpoint final april 29 2013
 
What makes a service family-centred? Reflections and Perspectives using MPOC ...
What makes a service family-centred? Reflections and Perspectives using MPOC ...What makes a service family-centred? Reflections and Perspectives using MPOC ...
What makes a service family-centred? Reflections and Perspectives using MPOC ...
 
Lost? Finding Your Medical Home!
Lost? Finding Your Medical Home!Lost? Finding Your Medical Home!
Lost? Finding Your Medical Home!
 
Teen Pregnancy Powerpoint
Teen Pregnancy PowerpointTeen Pregnancy Powerpoint
Teen Pregnancy Powerpoint
 
FAW Spring 2015
FAW Spring 2015FAW Spring 2015
FAW Spring 2015
 
LIONS QUEST1
LIONS  QUEST1LIONS  QUEST1
LIONS QUEST1
 
Strengthening Families in Child Welfare Professional Development
Strengthening Families in Child Welfare Professional DevelopmentStrengthening Families in Child Welfare Professional Development
Strengthening Families in Child Welfare Professional Development
 
2010-2011 Denton ISD Parent Survey
2010-2011 Denton ISD Parent Survey2010-2011 Denton ISD Parent Survey
2010-2011 Denton ISD Parent Survey
 
TEDxTallahassee 2015
TEDxTallahassee 2015TEDxTallahassee 2015
TEDxTallahassee 2015
 
The Florida Poll
The Florida PollThe Florida Poll
The Florida Poll
 
Parent and child fostering guide.pdf
Parent and child fostering guide.pdfParent and child fostering guide.pdf
Parent and child fostering guide.pdf
 
Single parent
Single parentSingle parent
Single parent
 
Lund Newsletter
Lund NewsletterLund Newsletter
Lund Newsletter
 
Mgd 120 foster care ppt
Mgd 120 foster care pptMgd 120 foster care ppt
Mgd 120 foster care ppt
 

More from Children’s Trust of South Carolina

Understanding the spectrum of prenatal alcohol exposure part 2
Understanding the spectrum of prenatal alcohol exposure part 2Understanding the spectrum of prenatal alcohol exposure part 2
Understanding the spectrum of prenatal alcohol exposure part 2
Children’s Trust of South Carolina
 
Understanding the Spectrum of Prenatal Alcohol Exposure part 1
Understanding the Spectrum of Prenatal Alcohol Exposure part 1Understanding the Spectrum of Prenatal Alcohol Exposure part 1
Understanding the Spectrum of Prenatal Alcohol Exposure part 1
Children’s Trust of South Carolina
 
Working with Adults with FASD to Prevent FASD
Working with Adults with FASD to Prevent FASDWorking with Adults with FASD to Prevent FASD
Working with Adults with FASD to Prevent FASD
Children’s Trust of South Carolina
 
Adaptive Learning for Collective Impact and Applied Systems THINKING
Adaptive Learning for Collective Impact and Applied Systems THINKINGAdaptive Learning for Collective Impact and Applied Systems THINKING
Adaptive Learning for Collective Impact and Applied Systems THINKING
Children’s Trust of South Carolina
 
Let's Get UnBusy
Let's Get UnBusyLet's Get UnBusy
Creating a Soft Place to Land: Supporting Families of the Opioid Epidemic
Creating a Soft Place to Land: Supporting Families of the Opioid EpidemicCreating a Soft Place to Land: Supporting Families of the Opioid Epidemic
Creating a Soft Place to Land: Supporting Families of the Opioid Epidemic
Children’s Trust of South Carolina
 
The Struggle is Real: Working with Fathers
The Struggle is Real: Working with FathersThe Struggle is Real: Working with Fathers
The Struggle is Real: Working with Fathers
Children’s Trust of South Carolina
 
Promoting Adolescent Mental Health Wellness Through Mindfulness and Positive ...
Promoting Adolescent Mental Health Wellness Through Mindfulness and Positive ...Promoting Adolescent Mental Health Wellness Through Mindfulness and Positive ...
Promoting Adolescent Mental Health Wellness Through Mindfulness and Positive ...
Children’s Trust of South Carolina
 
ReSource Solutions - Inclusion: The Critical Dance of Racial Equity
ReSource Solutions - Inclusion: The Critical Dance of Racial EquityReSource Solutions - Inclusion: The Critical Dance of Racial Equity
ReSource Solutions - Inclusion: The Critical Dance of Racial Equity
Children’s Trust of South Carolina
 
Cultivating a Mindset of Resiliency
Cultivating a Mindset of ResiliencyCultivating a Mindset of Resiliency
Cultivating a Mindset of Resiliency
Children’s Trust of South Carolina
 
Aunt Bertha - Connection Families to Social Service Resources
Aunt Bertha - Connection Families to Social Service ResourcesAunt Bertha - Connection Families to Social Service Resources
Aunt Bertha - Connection Families to Social Service Resources
Children’s Trust of South Carolina
 
StatChat: Using Data as a Non Data User
StatChat: Using Data as a Non Data UserStatChat: Using Data as a Non Data User
StatChat: Using Data as a Non Data User
Children’s Trust of South Carolina
 
Cultural Humility, Racial Equity, and the Protective Factors
Cultural Humility, Racial Equity, and the Protective FactorsCultural Humility, Racial Equity, and the Protective Factors
Cultural Humility, Racial Equity, and the Protective Factors
Children’s Trust of South Carolina
 
Healing Communities: Hero's Journey
Healing Communities: Hero's JourneyHealing Communities: Hero's Journey
Healing Communities: Hero's Journey
Children’s Trust of South Carolina
 
An Innovative Planning Framework: Building Collective Impact
An Innovative Planning Framework: Building Collective ImpactAn Innovative Planning Framework: Building Collective Impact
An Innovative Planning Framework: Building Collective Impact
Children’s Trust of South Carolina
 
Building Community Resilience and Well-Being Using ACE Data
Building Community Resilience and Well-Being Using ACE DataBuilding Community Resilience and Well-Being Using ACE Data
Building Community Resilience and Well-Being Using ACE Data
Children’s Trust of South Carolina
 
Parent Group Facilitation
Parent Group FacilitationParent Group Facilitation
Parent Group Facilitation
Children’s Trust of South Carolina
 
Essentials of Working with Latino Families
Essentials of Working with Latino FamiliesEssentials of Working with Latino Families
Essentials of Working with Latino Families
Children’s Trust of South Carolina
 
Session 1.4 building community resources (kristen&virginia)
Session 1.4 building community resources (kristen&virginia)Session 1.4 building community resources (kristen&virginia)
Session 1.4 building community resources (kristen&virginia)
Children’s Trust of South Carolina
 
Reflective Practice
Reflective PracticeReflective Practice

More from Children’s Trust of South Carolina (20)

Understanding the spectrum of prenatal alcohol exposure part 2
Understanding the spectrum of prenatal alcohol exposure part 2Understanding the spectrum of prenatal alcohol exposure part 2
Understanding the spectrum of prenatal alcohol exposure part 2
 
Understanding the Spectrum of Prenatal Alcohol Exposure part 1
Understanding the Spectrum of Prenatal Alcohol Exposure part 1Understanding the Spectrum of Prenatal Alcohol Exposure part 1
Understanding the Spectrum of Prenatal Alcohol Exposure part 1
 
Working with Adults with FASD to Prevent FASD
Working with Adults with FASD to Prevent FASDWorking with Adults with FASD to Prevent FASD
Working with Adults with FASD to Prevent FASD
 
Adaptive Learning for Collective Impact and Applied Systems THINKING
Adaptive Learning for Collective Impact and Applied Systems THINKINGAdaptive Learning for Collective Impact and Applied Systems THINKING
Adaptive Learning for Collective Impact and Applied Systems THINKING
 
Let's Get UnBusy
Let's Get UnBusyLet's Get UnBusy
Let's Get UnBusy
 
Creating a Soft Place to Land: Supporting Families of the Opioid Epidemic
Creating a Soft Place to Land: Supporting Families of the Opioid EpidemicCreating a Soft Place to Land: Supporting Families of the Opioid Epidemic
Creating a Soft Place to Land: Supporting Families of the Opioid Epidemic
 
The Struggle is Real: Working with Fathers
The Struggle is Real: Working with FathersThe Struggle is Real: Working with Fathers
The Struggle is Real: Working with Fathers
 
Promoting Adolescent Mental Health Wellness Through Mindfulness and Positive ...
Promoting Adolescent Mental Health Wellness Through Mindfulness and Positive ...Promoting Adolescent Mental Health Wellness Through Mindfulness and Positive ...
Promoting Adolescent Mental Health Wellness Through Mindfulness and Positive ...
 
ReSource Solutions - Inclusion: The Critical Dance of Racial Equity
ReSource Solutions - Inclusion: The Critical Dance of Racial EquityReSource Solutions - Inclusion: The Critical Dance of Racial Equity
ReSource Solutions - Inclusion: The Critical Dance of Racial Equity
 
Cultivating a Mindset of Resiliency
Cultivating a Mindset of ResiliencyCultivating a Mindset of Resiliency
Cultivating a Mindset of Resiliency
 
Aunt Bertha - Connection Families to Social Service Resources
Aunt Bertha - Connection Families to Social Service ResourcesAunt Bertha - Connection Families to Social Service Resources
Aunt Bertha - Connection Families to Social Service Resources
 
StatChat: Using Data as a Non Data User
StatChat: Using Data as a Non Data UserStatChat: Using Data as a Non Data User
StatChat: Using Data as a Non Data User
 
Cultural Humility, Racial Equity, and the Protective Factors
Cultural Humility, Racial Equity, and the Protective FactorsCultural Humility, Racial Equity, and the Protective Factors
Cultural Humility, Racial Equity, and the Protective Factors
 
Healing Communities: Hero's Journey
Healing Communities: Hero's JourneyHealing Communities: Hero's Journey
Healing Communities: Hero's Journey
 
An Innovative Planning Framework: Building Collective Impact
An Innovative Planning Framework: Building Collective ImpactAn Innovative Planning Framework: Building Collective Impact
An Innovative Planning Framework: Building Collective Impact
 
Building Community Resilience and Well-Being Using ACE Data
Building Community Resilience and Well-Being Using ACE DataBuilding Community Resilience and Well-Being Using ACE Data
Building Community Resilience and Well-Being Using ACE Data
 
Parent Group Facilitation
Parent Group FacilitationParent Group Facilitation
Parent Group Facilitation
 
Essentials of Working with Latino Families
Essentials of Working with Latino FamiliesEssentials of Working with Latino Families
Essentials of Working with Latino Families
 
Session 1.4 building community resources (kristen&virginia)
Session 1.4 building community resources (kristen&virginia)Session 1.4 building community resources (kristen&virginia)
Session 1.4 building community resources (kristen&virginia)
 
Reflective Practice
Reflective PracticeReflective Practice
Reflective Practice
 

Recently uploaded

2 Post harvest Physiology of Horticulture produce.pptx
2 Post harvest Physiology of Horticulture  produce.pptx2 Post harvest Physiology of Horticulture  produce.pptx
2 Post harvest Physiology of Horticulture produce.pptx
UmeshTimilsina1
 
1. Importance_of_reducing_postharvest_loss.pptx
1. Importance_of_reducing_postharvest_loss.pptx1. Importance_of_reducing_postharvest_loss.pptx
1. Importance_of_reducing_postharvest_loss.pptx
UmeshTimilsina1
 
V2-NLC-Certificate-of-Completion_Learner.docx
V2-NLC-Certificate-of-Completion_Learner.docxV2-NLC-Certificate-of-Completion_Learner.docx
V2-NLC-Certificate-of-Completion_Learner.docx
302491
 
Introduction to Banking System in India.ppt
Introduction to Banking System in India.pptIntroduction to Banking System in India.ppt
Introduction to Banking System in India.ppt
Dr. S. Bulomine Regi
 
MathematicsGrade7-Presentation-July-12024.pptx
MathematicsGrade7-Presentation-July-12024.pptxMathematicsGrade7-Presentation-July-12024.pptx
MathematicsGrade7-Presentation-July-12024.pptx
nolicaliso1
 
ASP.NET Core Interview Questions PDF By ScholarHat.pdf
ASP.NET Core Interview Questions PDF By ScholarHat.pdfASP.NET Core Interview Questions PDF By ScholarHat.pdf
ASP.NET Core Interview Questions PDF By ScholarHat.pdf
Scholarhat
 
SQL Server Interview Questions PDF By ScholarHat
SQL Server Interview Questions PDF By ScholarHatSQL Server Interview Questions PDF By ScholarHat
SQL Server Interview Questions PDF By ScholarHat
Scholarhat
 
JavaScript Interview Questions PDF By ScholarHat
JavaScript Interview  Questions PDF By ScholarHatJavaScript Interview  Questions PDF By ScholarHat
JavaScript Interview Questions PDF By ScholarHat
Scholarhat
 
SD_Integrating 21st Century Skills in Classroom-based Assessment.pptx
SD_Integrating 21st Century Skills in Classroom-based Assessment.pptxSD_Integrating 21st Century Skills in Classroom-based Assessment.pptx
SD_Integrating 21st Century Skills in Classroom-based Assessment.pptx
elwoodprias1
 
Parkinson Disease & Anti-Parkinsonian Drugs.pptx
Parkinson Disease & Anti-Parkinsonian Drugs.pptxParkinson Disease & Anti-Parkinsonian Drugs.pptx
Parkinson Disease & Anti-Parkinsonian Drugs.pptx
AnujVishwakarma34
 
Demonstration module in Odoo 17 - Odoo 17 Slides
Demonstration module in Odoo 17 - Odoo 17 SlidesDemonstration module in Odoo 17 - Odoo 17 Slides
Demonstration module in Odoo 17 - Odoo 17 Slides
Celine George
 
Mail Server Configuration Using App passwords in Odoo 17
Mail Server Configuration Using App passwords in Odoo 17Mail Server Configuration Using App passwords in Odoo 17
Mail Server Configuration Using App passwords in Odoo 17
Celine George
 
Odoo 17 Events - Attendees List Scanning
Odoo 17 Events - Attendees List ScanningOdoo 17 Events - Attendees List Scanning
Odoo 17 Events - Attendees List Scanning
Celine George
 
MATATAG CURRICULUM sample lesson exemplar.docx
MATATAG CURRICULUM sample lesson exemplar.docxMATATAG CURRICULUM sample lesson exemplar.docx
MATATAG CURRICULUM sample lesson exemplar.docx
yardenmendoza
 
Dot NET Interview Questions PDF By ScholarHat
Dot NET Interview Questions PDF By ScholarHatDot NET Interview Questions PDF By ScholarHat
Dot NET Interview Questions PDF By ScholarHat
Scholarhat
 
PRESS RELEASE - UNIVERSITY OF GHANA, JULY 16, 2024.pdf
PRESS RELEASE - UNIVERSITY OF GHANA, JULY 16, 2024.pdfPRESS RELEASE - UNIVERSITY OF GHANA, JULY 16, 2024.pdf
PRESS RELEASE - UNIVERSITY OF GHANA, JULY 16, 2024.pdf
nservice241
 
2024 Winter SWAYAM NPTEL & A Student.pptx
2024 Winter SWAYAM NPTEL & A Student.pptx2024 Winter SWAYAM NPTEL & A Student.pptx
2024 Winter SWAYAM NPTEL & A Student.pptx
Utsav Yagnik
 
Introduction to Google Productivity Tools for Office and Personal Use
Introduction to Google Productivity Tools for Office and Personal UseIntroduction to Google Productivity Tools for Office and Personal Use
Introduction to Google Productivity Tools for Office and Personal Use
Excellence Foundation for South Sudan
 
BỘ ĐỀ THI HỌC SINH GIỎI CÁC TỈNH MÔN TIẾNG ANH LỚP 9 NĂM HỌC 2023-2024 (CÓ FI...
BỘ ĐỀ THI HỌC SINH GIỎI CÁC TỈNH MÔN TIẾNG ANH LỚP 9 NĂM HỌC 2023-2024 (CÓ FI...BỘ ĐỀ THI HỌC SINH GIỎI CÁC TỈNH MÔN TIẾNG ANH LỚP 9 NĂM HỌC 2023-2024 (CÓ FI...
BỘ ĐỀ THI HỌC SINH GIỎI CÁC TỈNH MÔN TIẾNG ANH LỚP 9 NĂM HỌC 2023-2024 (CÓ FI...
Nguyen Thanh Tu Collection
 
BÀI TẬP BỔ TRỢ 4 KỸ NĂNG TIẾNG ANH LỚP 12 - GLOBAL SUCCESS - FORM MỚI 2025 - ...
BÀI TẬP BỔ TRỢ 4 KỸ NĂNG TIẾNG ANH LỚP 12 - GLOBAL SUCCESS - FORM MỚI 2025 - ...BÀI TẬP BỔ TRỢ 4 KỸ NĂNG TIẾNG ANH LỚP 12 - GLOBAL SUCCESS - FORM MỚI 2025 - ...
BÀI TẬP BỔ TRỢ 4 KỸ NĂNG TIẾNG ANH LỚP 12 - GLOBAL SUCCESS - FORM MỚI 2025 - ...
Nguyen Thanh Tu Collection
 

Recently uploaded (20)

2 Post harvest Physiology of Horticulture produce.pptx
2 Post harvest Physiology of Horticulture  produce.pptx2 Post harvest Physiology of Horticulture  produce.pptx
2 Post harvest Physiology of Horticulture produce.pptx
 
1. Importance_of_reducing_postharvest_loss.pptx
1. Importance_of_reducing_postharvest_loss.pptx1. Importance_of_reducing_postharvest_loss.pptx
1. Importance_of_reducing_postharvest_loss.pptx
 
V2-NLC-Certificate-of-Completion_Learner.docx
V2-NLC-Certificate-of-Completion_Learner.docxV2-NLC-Certificate-of-Completion_Learner.docx
V2-NLC-Certificate-of-Completion_Learner.docx
 
Introduction to Banking System in India.ppt
Introduction to Banking System in India.pptIntroduction to Banking System in India.ppt
Introduction to Banking System in India.ppt
 
MathematicsGrade7-Presentation-July-12024.pptx
MathematicsGrade7-Presentation-July-12024.pptxMathematicsGrade7-Presentation-July-12024.pptx
MathematicsGrade7-Presentation-July-12024.pptx
 
ASP.NET Core Interview Questions PDF By ScholarHat.pdf
ASP.NET Core Interview Questions PDF By ScholarHat.pdfASP.NET Core Interview Questions PDF By ScholarHat.pdf
ASP.NET Core Interview Questions PDF By ScholarHat.pdf
 
SQL Server Interview Questions PDF By ScholarHat
SQL Server Interview Questions PDF By ScholarHatSQL Server Interview Questions PDF By ScholarHat
SQL Server Interview Questions PDF By ScholarHat
 
JavaScript Interview Questions PDF By ScholarHat
JavaScript Interview  Questions PDF By ScholarHatJavaScript Interview  Questions PDF By ScholarHat
JavaScript Interview Questions PDF By ScholarHat
 
SD_Integrating 21st Century Skills in Classroom-based Assessment.pptx
SD_Integrating 21st Century Skills in Classroom-based Assessment.pptxSD_Integrating 21st Century Skills in Classroom-based Assessment.pptx
SD_Integrating 21st Century Skills in Classroom-based Assessment.pptx
 
Parkinson Disease & Anti-Parkinsonian Drugs.pptx
Parkinson Disease & Anti-Parkinsonian Drugs.pptxParkinson Disease & Anti-Parkinsonian Drugs.pptx
Parkinson Disease & Anti-Parkinsonian Drugs.pptx
 
Demonstration module in Odoo 17 - Odoo 17 Slides
Demonstration module in Odoo 17 - Odoo 17 SlidesDemonstration module in Odoo 17 - Odoo 17 Slides
Demonstration module in Odoo 17 - Odoo 17 Slides
 
Mail Server Configuration Using App passwords in Odoo 17
Mail Server Configuration Using App passwords in Odoo 17Mail Server Configuration Using App passwords in Odoo 17
Mail Server Configuration Using App passwords in Odoo 17
 
Odoo 17 Events - Attendees List Scanning
Odoo 17 Events - Attendees List ScanningOdoo 17 Events - Attendees List Scanning
Odoo 17 Events - Attendees List Scanning
 
MATATAG CURRICULUM sample lesson exemplar.docx
MATATAG CURRICULUM sample lesson exemplar.docxMATATAG CURRICULUM sample lesson exemplar.docx
MATATAG CURRICULUM sample lesson exemplar.docx
 
Dot NET Interview Questions PDF By ScholarHat
Dot NET Interview Questions PDF By ScholarHatDot NET Interview Questions PDF By ScholarHat
Dot NET Interview Questions PDF By ScholarHat
 
PRESS RELEASE - UNIVERSITY OF GHANA, JULY 16, 2024.pdf
PRESS RELEASE - UNIVERSITY OF GHANA, JULY 16, 2024.pdfPRESS RELEASE - UNIVERSITY OF GHANA, JULY 16, 2024.pdf
PRESS RELEASE - UNIVERSITY OF GHANA, JULY 16, 2024.pdf
 
2024 Winter SWAYAM NPTEL & A Student.pptx
2024 Winter SWAYAM NPTEL & A Student.pptx2024 Winter SWAYAM NPTEL & A Student.pptx
2024 Winter SWAYAM NPTEL & A Student.pptx
 
Introduction to Google Productivity Tools for Office and Personal Use
Introduction to Google Productivity Tools for Office and Personal UseIntroduction to Google Productivity Tools for Office and Personal Use
Introduction to Google Productivity Tools for Office and Personal Use
 
BỘ ĐỀ THI HỌC SINH GIỎI CÁC TỈNH MÔN TIẾNG ANH LỚP 9 NĂM HỌC 2023-2024 (CÓ FI...
BỘ ĐỀ THI HỌC SINH GIỎI CÁC TỈNH MÔN TIẾNG ANH LỚP 9 NĂM HỌC 2023-2024 (CÓ FI...BỘ ĐỀ THI HỌC SINH GIỎI CÁC TỈNH MÔN TIẾNG ANH LỚP 9 NĂM HỌC 2023-2024 (CÓ FI...
BỘ ĐỀ THI HỌC SINH GIỎI CÁC TỈNH MÔN TIẾNG ANH LỚP 9 NĂM HỌC 2023-2024 (CÓ FI...
 
BÀI TẬP BỔ TRỢ 4 KỸ NĂNG TIẾNG ANH LỚP 12 - GLOBAL SUCCESS - FORM MỚI 2025 - ...
BÀI TẬP BỔ TRỢ 4 KỸ NĂNG TIẾNG ANH LỚP 12 - GLOBAL SUCCESS - FORM MỚI 2025 - ...BÀI TẬP BỔ TRỢ 4 KỸ NĂNG TIẾNG ANH LỚP 12 - GLOBAL SUCCESS - FORM MỚI 2025 - ...
BÀI TẬP BỔ TRỢ 4 KỸ NĂNG TIẾNG ANH LỚP 12 - GLOBAL SUCCESS - FORM MỚI 2025 - ...
 

Helping Families in the Journey with a Child with Special Needs

  • 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………….
  • 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)
  • 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

Editor's Notes

  1. Handouts are on your table.
  2. We are unable to be in every county BUT YOU ARE! Describe our vision. FC is YOUR organization!!!! I need one person at each table to pass around a sheet of paper. If you want to get connected and you are not, please write your name, phone number and email address (PLEASE PRINT CAREFULLY).