The SEEDLING Family SHADE Newsletter Family SHADE:

Family SHADE Newsletter
Volume 2, Issue 1
Family SHADE: New Website to Launch Fall 2012
Family SHADE
MISSION: Delaware’s
Family SHADE is a
collaborative alliance of
family partners and
organizations committed
to improving the quality of
life for children and youth
with special healthcare
needs by connecting
families and providers to
information, resources
and services.
will enable, empower and
enrich families’ lives by
connecting families to
supports and services.
In November 2011, Family SHADE launched a temporary website as a
mechanism to connect member organizations to one another and to
share resources. As part of our continuing efforts to connect families
with resources, Family SHADE will launch a new website in the Fall of
2012 with an exciting array of
new features. The new
website will include: a
roadmap to services for
families, a member’s blog, a
searchable database, member
contacts and information, and a
coordinated statewide events
calendar. So be sure to visit
Family SHADE Database and Mobile App
Family SHADE’s database is nearly complete. The database will be
Delaware’s premier resource for families and for providers who serve
children with special healthcare needs. This comprehensive database of
services will be accessible on the Family SHADE website. In addition, a
new Family SHADE mobile application will allow families to access the
database from a smartphone. Member organizations will be able to add
a web button to link their websites directly with the Family SHADE
database. The goal is to provide families and providers access to the
latest and most up-to-date information any where at any time!
Attention Organizations!
In order to include the most complete and accurate data WE NEED
YOU! You will be contacted by Children and Families First to provide
information about your organization’s services and programs. This will
allow Family SHADE to provide the most accurate and up-to-date
information to families.
In addition, funding is available for Family SHADE member organizations
to receive free training, certification and access to the comprehensive
database. We will let you know of training opportunities in the future.
Searchable, for everyone, from anywhere.
Funding for Family SHADE Member Initiatives
In June 2011, Delaware’s Division of Public Health was awarded a grant from
the Health Resource and Services Administration (HRSA) to address the needs
of children and youth with special healthcare needs. Family SHADE received
$225,000 of these funds to award mini-grants and subcontracts to Family
SHADE member organizations. The initiatives that have been funded to date are
listed below:
“Identify and address the unmet health-related and service needs of children
and youth with chronic health conditions in Delaware.”
“The mini-grant funding
allows us to focus on
specific issues of
importance to the
families we serve. The
mini-grant for families of
children with chronic
health conditions will
create tangible resources
and supports for families
and identify access points
to services for children
with chronic health
Ann Phillips
Executive Director
Delaware Family Voices
Awarded to the Parent Information Center of Delaware, Inc.
Collaborators: Child Development Watch, Caminos de Georgetown and
“Identify and address the unmet health-relates and service needs of children
and youth with chronic health conditions in Delaware.”
Awarded to Delaware Family Voices
Collaborators: American Academy of Pediatrics and the Family Advisory
Council at A.I. DuPont Hospital for Children
“Conduct an annual health and resource event to provide an opportunity for
families of children and youth with special healthcare needs to learn about the
state’s comprehensive and coordinated service system.”
Awarded to United Cerebral Palsy
Collaborator: The Brain Injury Association of Delaware.
“Provide families of CYSHCN with an electronic and printed ‘roadmap’ that
clarifies the relationships between various services, providers, funding streams
and eligibility criteria.”
Two additional initiatives will be funded in the upcoming year:
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Spring Summit a HUGE Success!
Advisory Board Members
Marie Anne Aghazadian
Parent Information Center of Delaware
Chris Buker
Parents as Teachers
Esther Curtis
Brain Injury Association of Delaware
Bill Doolittle, Parent
Staci Forrest, Self-Advocate
Rev. Robert Hall
Delaware Ecumenical Council on
Children and Families
Lisa Jubb
Variety — The Children’s Charity
Jane Miller
Practice Without Pressure
Heidi Mizell
Autism Delaware
Ann Phillips
Delaware Family Voices
Pam Reuther
Coordinating Council for Children with
Disabilities; Easter Seals
Kristina Stroh
All the Difference
Lori Verlinghieri, Parent
Family SHADE held its Spring Summit on June 13, 2012 at Buena Vista in
New Castle. The Summit began with the election of Family SHADE’s first
official Advisory Board! The Advisory Board includes a youth self-advocate,
family members and representatives of organizations that serve children and
youth with special healthcare needs. Board members have generously
committed to attending quarterly Family SHADE meetings for a three-year
term. Officers were elected by the Advisory Board members in September.
Chair: Esther Curtis, Brain Injury Association of Delaware
Vice-Chair: Bill Doolittle, Parent
Secretary: Staci Forrest, Self-Advocate
The election of the Advisory Board was followed by an information-packed
presentation on Social Media and Marketing for Non-Profit
Organizations. Kati Driscoll, Social Media Analyst for AAA Club Partners
and teacher of Interactive and Social Media at the Delaware College of Art and
Design, and Lisa Quinn, Social Media Community Lead for AAA Mid-Atlantic,
engaged Summit attendees with a dynamic and humorous presentation that
included tips on how to effectively use Facebook, Twitter, LinkedIn and other
forms of social media to reach families.
Families Know Best: Gaining the Family Perspective
Family SHADE is continuing its efforts to gain input from families about
their support and service needs through Families Know Best. This
voluntary parent advisory group provides families of children with
special healthcare needs with an opportunity to share their concerns
with Family SHADE organizations, policy makers and agencies
statewide. Families will receive a gift card to thank them for their
also provides an opportunity for YOU, the
organizations that serve these families, to ask families for their input on
topics of concern to your organization. Family SHADE organizations
may submit survey questions through Family SHADE staff. The Family
SHADE Advisory Board will review the questions and choose several
each month to include on the survey. Surveys will be sent to parents
who have signed up to participate. The survey data will be compiled by
staff and posted on the Family SHADE website at
Families Know Best
Help spread the word to the families you serve!
brochures are available in English and Spanish.
Contact Annalisa Ekbladh at 302-831-0626 or [email protected]
Families Know Best
Page 3
Phone: 302-831-0626
Fax: 302-831-4690
E-mail: [email protected]
Center for Disabilities Studies
University of Delaware
461 Wyoming Road
Newark, DE 19716
Family SHADE
Family SHADE News at a Glance
Check out these
upcoming Family
SHADE events!
Networking Breakfast
Family SHADE will be
hosting a Networking
Breakfast for organizations
in New Castle County.
Each Networking Breakfast
will feature a local
organization who serves
children with special
healthcare needs.
Attendees will have the
opportunity to share
events and make new
contacts. Stay tuned for
time and location!
Technical Assistance
Workshop: FAMILY
Family SHADE members are
invited to a free 2-day
workshop on Nov. 7 & 8
2012. Our guest speaker,
Susan Yuan, will use
interactive exercises to
demonstrate how cultural
issues can impact our
interactions with families.
Family SHADE member
organizations are invited to
bring their staff.
To register visit
Become a MEMBER
of Family SHADE!
Interested in becoming a
member of Family SHADE?
Organizations serving
children with special
healthcare needs, family
members and self-advocates
may become members of
Family SHADE. Visit Family
SHADE’s website at for
more information about
how you can become a