Transcript www.spanadvocacy.org

•Nor •Well
a
s
•Family
•Families &
Family
•Engagement:
•WhyCastro
It Matters
•Mary
Summers
•Family
Voices
TIES
•[email protected] of Massachusetts
•LEND Presentation December 7, 2012
•We’d be pleased to get to know you.
•What brought you to the LEND
Program?
•Who We Are
•.
Nora Wells
•.
Mary Castro Summers
•n3 sons, eldest of whom has cerebral palsy
•nFamily Voices Director of Programs, Co•Director of NCFPP
•nParent Role
•nProfessional Role
•Where We’re From

Founded in 1992 as a grassroots network of families of CSHCN to
•advocate on behalf of families during Clinton health care reform
•debates (founders involved in creating special ed laws)

National projects - NCFPP; IMPACT; Health and Wellness for all
•children; Kids as Self Advocates (KASA); Policy

Family-to-Family Health Information Centers (F2F HICs) – 51 (first
•funding, 2005)

Mission – to achieve family-centered care for all CYSHCN
A national network of family leadership advocating for improved
•health programs and policies (F2Fs and SAOs); one in every
•state
•n
Providing peer support around health issues to families, tools to
•make informed healthcare decisions and to become partners
•n
•n
Building partnerships among professionals and families
•n
Serving as a trusted resource on health care
•Mission – to achieve family-centered care for all
•CYSHCN
•ü A national
network of family leadership advocating for
•improved health programs and policies
•ü
Peer support around health issues, tools to make
•informed decisions, partner with professionals
•ü
Improving systems through partnerships among
•professionals and families
•ü
Providing family perspective on health care
•Where We’re From
 First federally-funded PTI
 Home to many parent-run projects that help families
•raising children with special needs & their
•professionals partners
Individualized technical assistance about navigating
•services
•ü Referrals & support to families raising children with special
•needs and their professional partners
•ü Workshops, teleconferences, web-based trainings
•ü
 Newsline
 Visions of Community
 www.fcsn.org or 617-236-7210
•Why We Do What We
Do
•Why It’s Important to Learn
•about Resources & Systems

Family outcomes improve when their needs are
•met
•ü Appropriate
•ü

health services -* better health
Appropriate referrals & services -* less stress
Understanding = Empowerment
•ü
When families share their perspective & experiences,
•it helps professionals better understand family needs
•-*family/professional partnerships
•ü
Individual advocacy -* Advocacy for all
•ü
Helps ensure systems are more responsive to
•families needs -*systems change/improvement
•Where have we come from?

Medical Model: professionals considered the
•experts and families expected to follow
 Limited visiting hours: Parents allowed to “visit”
•their hospitalized children during specified hours
 Many children “living” in institutions: in order
•to receive the health care or support they need
 Professionals developed the system: families
•experienced the system
•Early History & Influences

Specific disability groups: 1950s families join together around
•diagnoses to demand services for their children with disabilities –
•ARC, UCP, etc.

Civil Rights Movement: 1960s models fair and equal treatment
•for all

Woman’s Health Care Movement : late 1960s women demand
•roles in their own health care
•Influence of Laws & Policies
 Federal Special Ed Law passed, 1974: families
and special educators work together to pass PL 94142 (became IDEA); (PA passed first state special ed
law)
 Roles for families: “parent training and education
centers” in every state help families learn their roles in in
special education; families meet across special needs
 Early Intervention Law/regulations (80’s): expanded
roles for families in planning their own child’s care; roles in
ICCs at the program and policy level
 Medicaid Program (60’s): initiating the idea that
children deserve health care coverage; Katie Beckett
Waivers: (80’s) allowing children to live at home and in
their community
•Leadership from MCHB

MCHB listens to families
/responds to requests for
involvement: families as staff in
projects; $ for families at
meetings; families as grant
reviewers; HIV program design

MCHB funds the first family
driven project: Communication
among Parents and Professionals
(early 80’s); family leaders gather
yearly; promotion of family roles in
Title V

OBRA ’89 language:
...promote family centered,
community based, coordinated,
culturally competent care; support
family/professional partnerships
•Opportunities Increase
 Hospital building projects lead to
Family Advisory Committees:
families partner with hospitals around
design of spaces/policies
 FACs lead to Family Resource
Centers: families hired in a variety of
roles in hospitals, including resource
centers, clinics and other settings
 National Meetings begin to
include families in health care
meetings: ACCH National
Conferences
 Families as faculty: in medical
schools/pediatric training programs
•MCHB Ongoing Leadership

Surgeon General’s Conferences
•(80’s)

MCHB definition of CYSHCN

Family Roles in Title V Block Grant
•Reviews

Bright Future Guidance & AAP
•partnerships

Requirements for Title V to report on
•family participation – PM 14; Form
13

2010 Express, Six Core Performance
•Measures; President’s New Freedom
•Initiative; system of care
•1987 Surgeon General’s Report
 Recognition that the family is the constant in the child’s life while the
service systems and personnel within those systems fluctuate.
 Facilitation of parent/professional collaboration at all levels of health care-care of an individual child; program development, implementation, and
evaluation: and policy formulation.
 Sharing of unbiased and complete information with parents about
their child’s care on an ongoing basis in a supportive manner.
 Implementation of comprehensive policies and programs that
provide emotional and financial support to families.
 Recognition of family strengths and diversity, and respect for a
variety of methods of coping.
 Encouragement of normal patterns of living in the home and community.
 Understanding and incorporation of the developmental needs of
infants, children and adolescents, and their families into the health care
delivery system.
 Encouragement and facilitation of parent-to-parent support.
 Assurance that the design of health care delivery systems is
flexible, accessible and responsive to families.
•Family-Centered Care
Definition
•The foundation of family-centered
is the partnership between
•July care
2005
•families and professionals. Based on this partnership, family•centered care:
 Acknowledges the family as the constant in a child’s life.
 Builds on family strengths.
 Supports the child in learning about and participating in his/her
care and decision-making.
 Honors cultural diversity and family traditions.
 Recognizes the importance of community-based services.
 Promotes an individual and developmental approach.
 Encourages family-to-family and peer support.
 Supports youth as they transition to adulthood.
 Develops policies, practices, and systems that are family-friendly
and family-centered in all settings.
 Celebrates successes.
•It’s not just the right thing to do •It’s the law!
 Office for Civil Rights
•www.hhs.gov/ocr/office/index.html
 Americans with Disabilities Act of
•1990 and ADA Amendments Act of
•2008www.ADA.gov
 History of Civil Rights Law
•www.dredf.org/publications/ada history.shtml
•Maternal & Child Health Bureau
o Created under Title V of the Social Security Act
o Part of the U.S. Dept. of Health & Human Services/ Health
•Resources & Services Administration
o Works to improve the health of mothers, children & their
•families
o Implement family-centered, community-based systems of
•coordinated care for children with special healthcare
•needs.
o Provides & ensures access to preventive & child care
•services, as well as rehabilitative services for certain
•children.
•Maternal & Child Health Bureau





Invites stakeholders to participate in the planning
•process
Title V Needs Assessment
MA Title V Needs Assessment
•https://perfdata.hrsa.gov/MCHB/TVISReports/Documen
t
•s/NeedsAssessments/2011/MA-NeedsAssessment.pdf
More about MCHB at
•www.mchb.hrsa.gov
75th Anniversary of Title V programs
•http://www.mchlibrary.info/anniversary/
•Healthy People 2010





Family partnership and satisfaction
Medical Home
Early and continuous screening
Adequate financing for care
Easy to Access Community-based
•services
 Transition to Adulthood
•The MCHB-Funded National
•Technical Assistance Centers
 Family Voices National Center for Family/Professional
•Partnerships (NCFPP)
 Medical Home Initiatives for CYSHCN
 Hearing Assessment & Management
 The Catalyst Center: Improving Financing of Care for
•CYSHCN
 Community-Based Services
 Health Care Transitional Center for Youth with Special
•Health Needs
 National Center for Cultural Competence
•www.ffv-ncfpp.org/about/partners
•Healthy People 2020
•http://www.healthypeople.gov/
 Increase the proportion of people with disabilities who
•report having access to health and wellness programs.
 Reduce the proportion of people with disabilities who
•report unmet need for assistive devices, service
animals,
•technology services, and accessible technologies they
•need.
 Increase the proportion of parents or other caregivers of
•youth with disabilities aged 12 to 17 years who report
•engaging in transition planning from pediatric to adult
•health care.
 Eliminate disparities in employment rates between
•working-aged adults with and without disabilities
•How are our organizations
•connected?
 National Family Voices office in NM; satellite office in
•MA
 Family Voices State Affiliation Organization and F2F
•in MA at the FCSN in Boston
•ü Help families in MA
•ü Identify state priorities
•ü Mass Family Voices @ Federation
•ü Contribute to national advocacy agenda
•MA F2F HIC – What We Do
•Provide free, confidential technical assistance to
•families raising children & youth with special
health
•care needs & others about:
 Public & private health insurance
•benefits
 Other health care financing options
 Medical Home
 Other health care services & supports
•MA F2F HIC – How We Do ‘It’
 Toll-free number at 1-800-331-0688, ext. 210
Confidential, free
•n Call with questions get answers
•n




Host Topical Conference Calls
Host Joining Voices, an annual conference
Sponsor a statewide listserv
Maintain a website with a calendar of events, resources
•& information atwww.massfamilyvoices.org
 Give presentations
•MA F2F HIC – Why We Do ‘It’
•So families raising CYSHCN will be:
 Able to make informed choices about health care
•financing options for their children & youth,
 More knowledgeable about health care services &
•supports,
 Able to more easily access services & supports,
 More satisfied with the services their child & family
•receives, and
 More effective partners in decision-making with health
•care providers, other providers, systems of care, & with
•policy makers
•MA Department of Public Health
•supports these efforts
•♥ Bureau of Family Health and Nutrition
•♥ Division for Perinatal, Early Childhood and
•Special Health Care Needs
•♥ Office of Family Initiatives
•♥Family TIES of Massachusetts
•♥Early Intervention Parent Leadership Project
•Office of Family Initiatives:
•Mission
 Ensure family “voice” in policy, program,
•and evaluation for children and youth with
•special health care needs (CYSHCN)
 Support family-professional partnerships
 Provide information & opportunities that
•support family-centered, accessible,
•culturally competent systems of care
•Office of Family Initiatives:
Goals
 Create opportunities for family
•involvement
 Provide skill building that supports
•families to take on multiple roles
 Broad thinking about family/consumer
•involvement: what are the possibilities?
 Address health disparities
•Office of Family Initiatives:
•Core Principles





Family-centered
Collaborative
Culturally competent
Inclusive
Commitment to Partnership & Family
•Engagement
•Office of Family Initiatives:
•Projects & Activities
 Early Intervention Parent Leadership
•Project -www.eiplp.org
 Family TIES of Massachusetts
 Family-Professional Partnerships
 Emergency Preparedness
 Chapter 171 Family Support Plan
•www.mfofc.org/legislation/index.html
•Office of Family Initiatives:
•Learn More
•Suzanne Gottlieb, Director
•250 Washington Street, 5th Floor
•Boston, MA 02108
•PH: 617-624-5979
•EM: [email protected]
•Office of Family Initiatives &
•Family TIES of MA
•Family TIES of Massachusetts is funded by
•and works in collaboration with the
•Massachusetts Department of Public
Health.
•As parent-professionals, we receive
•leadership, direction, and support from the
•Office of Family Initiatives.
•Family TIES – What We Do
•, Provide information and referral
•services for families and
professionals
•supporting children with special
•healthcare needs
Offer parent-to-parent support
Promote opportunities to parents to
•build leadership skills
Maintain Central Directory of Mass.
•Early Intervention programs
•,
•,
•,
•Family TIES – How We Do ‘It’
•v Offer a toll-free line and local offices that parents
•and professionals can call for information and
•referral services – on a wide variety of topics.
•Directory of resources published annually and
•available at no cost.
•v Manage a volunteer-based parent matching
•program, to meet parents’ emotional needs.
•For difficult matches, we turn to our friends
•at P2PUSA or Genetic Alliance:
•www.p2pusa.org OR www.geneticalliance.org
•v Provide workshops and resource materials to
•share information and skills.
•v Maintain a website at: www.massfamilyties.org
•Family TIES – Why We Do ‘It’
As parents of children with special needs,
•we realize that the most powerful source
•of support is other parents.
•♥ Sharing up-to-date information provides family
•members with knowledge and skills that can
•help to improve their children’s opportunities.
•♥ We hope that advocacy skills can be passed
•along to our children, so they will take
•responsibility for their own care, learn to
•advocate for themselves, and realize the
power
•of their own voices – to the best of their ability.
•♥
•The Unique Value
•of the Parent Voice
 The importance of learning from the
•experience/expertise of other parents
 Agencies answer your questions, but don’t
•necessarily tell you everything you need to
•know.
 Parents can share lessons learned, pitfalls, and
•what else you need to know.
 Example: MassHealth doesn’t tell you your out•of-pocket expenses incurred during the
eligibility
•determination process are reimbursable.
•The Importance of
Partnerships
 It takes a village to
support our families...
 ...and the landscape in
Massachusetts is
changing!
•Why is this work important?
•How are the Children ?
•African tribal greeting
•You Can Make
a
•Difference
•Where does the
•power come from,
•to see the race to
the
•end?
•It comes from
within
•Chariots of Fire
•Power of One
•Author Unknown
•One song can spark a moment
One flower can wake the dream
One tree can start a forest
One bird can herald spring
One smile begins a friendship
One handclasp lifts a soul
One star can guide a ship at sea
One word can frame the goal
One vote can change a nation
One sunbeam lights a room
One candle wipes out darkness
One laugh will conquer gloom
One step must start each journey
One word must start a prayer
One hope will raise our spirits
One touch can show you care
One voice can speak with wisdom
One heart can know what is true
One Life can make a difference.