THE ASSOCIATION FOR
SUCCESSFUL PARENTING:
ENHANCING THE LIVES OF
FAMILIES WHEN PARENTS
HAVE LEARNING
DIFFICULTIES
Webinar presented on April 12, 2012 for the Arc by:
Bernadette Irwin
Co-President of TASP
irwin@kennedykrieger.org
Sue Jones
Co-President of TASP
suejones@unitedarc.org
Lindsay Brillhart
TASP Board Member – Chair of Self-Advocacy Committee
sparkles919@yahoo.com
1
GOALS FOR TODAY….
 HEAR FROM TWO PROGRAMS THAT SUPPORT
PARENTS WITH ID
 HEAR FROM A PARENT ON THE
CHALLENGES/JOYS OF PARENTING
 LEARN ABOUT THE ASSOCIATION FOR
SUCCESSFUL PARENTING: ENHANCING THE
LIVES OF FAMILIES WHEN PARENTS HAVE
LEARNING DIFFICULTIES
 IMPORTANT THINGS TO THINK ABOUT WHEN
PROVIDING SERVIES TO PARENTS WITH ID
 Q/A
2
TWO PROGRAM MODELS
 Bernadette Irwin, The Growing Together
Supported Parenting Program in Baltimore, MD
at PACT: Helping Children with Special Needs
 Sue Jones, Positive Parenting Program of the
United Arc, Greenfield, MA
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GROWING TOGETHER
 Bernadette Irwin, The Growing Together
Supported Parenting Program in Baltimore, MD
at PACT: Helping Children with Special Needs
4
Growing Together is Maryland’s only supported parenting program for
mothers and fathers who have intellectual disabilities and have young
children. We help parents provide safe,
supportive and stimulating
5
environments for their children.
How are we funded?
100 % from MD
Developmental
Disability
Administration
(DDA) for 18
families
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Wow, Who Knew….
There are approximately
120,000 children born each year
in the U.S. to parents with
cognitive limitations (APA)
In Maryland, there are approximately
16,000 parents who have
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intellectual disabilities (ARC of Maryland)
Another
interesting fact….
The majority of children born
to parents with
8
intellectual disabilities are born with normal IQs.
GROWING TOGETHER
 CHILDREN’S
COMPONENT
 Child-focused activities
Group Sessions
 Developmental
Peer Support and
assessments
Socialization
Social Work Counseling  On-site physical,
occupational,
Referral to community
speech/language therapy
resources
and special instruction, as
Transportation to/from
needed (through the
program
Baltimore City Infants and
Toddlers Program)
 PARENT
COMPONENT
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GROWING TOGETHER
 Eligibility Requirements
Twenty years of age or older
Have a child under age 3 living with them
Have an identified cognitive disability
Must be non-substance abusing and not currently
in treatment for substance abuse
 Live in Baltimore City or certain areas of Balto.
County
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
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WHAT WE TELL OUR PARENTS
ABOUT PLAY….SENC
 STRUCTURE – choices, routines, set rules for safety
and fairness
 ENGAGE -- have fun, be silly, use materials you
know your child will like, use favorite colors
 NURTURE – support, calm, encourage, comfort,
smile, kiss, cuddle, lots of I LOVE YOU and GREAT
JOB
 CHALLENGE – learn something new – make something
easy for them to do just a little bit harder
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Resources that we use….
 The Center for Applied Research in Education,
Darlene Mannix -- Academic and Practical Living Skills
Activities
 Color Me Healthy, Dunn, C.,(N.C. Cooperative
Extension), Thomas, C., (NC Division of Public Health),
Pegram, L., (NC Cooperative Extension)
 The Health and Wellness Program, Alexander J.
Tymchuk, www.brookespublishing.com
 Sunny Side of the Street, Iris Media --www.lookiris.com
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POSITIVE PARENTING
PROGRAM
 Sue Jones, Positive Parenting Program of the
United Arc, Greenfield, MA
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Fitting the Pieces Together
Supporting Parents with Intellectual and Developmental
Disabilities
The United Arc’s
Positive Parenting Program
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How We Started
 1980’s – Initial referrals from DMR and DPW primarily to
support parents during TPR
 Early 1990’s – Panel discussions at disability conferences in
MA regarding unmet needs of parents with ID and DD and
their families
 1995- Urban and rural county surveys of professionals &
focus groups with parents to identify service gaps and
unmet needs
 1997 – Initiation of parenting group with CTF PESP funds
 1998 – Establish Positive Parenting Resource Center with
DDS Innovation Grant
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Program Vision
which has guided development activities
 Activities to decrease parent isolation, promote learning,
networking, foster peer support:
 Parent education & support groups
 Individualized support, skills training and case management:
 Individualized Parenting Support & Home Visiting
 Development and enhancement of natural networks:
 Volunteer “Family Friends”
 Intensive Supports/Reunification:
 Transitional Supported Living Program
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The United Arc Model:
Positive Parenting Program Components
• Individual parenting support, case management & skills
training - serving 40 plus families each month
• Parent education & support groups - typically 3-7 ongoing
groups (contingent on funding)
• Transitional Supported Living (quasi-residential services) an apartment building housing
5 apartments for families, a supportive neighbor and
parent educators’ office
• Volunteer mentoring – 15-20 active volunteers that provide
program and family support
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Parent Education & Support Groups
General & topic specific subject groups:
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
understanding abuse & neglect
parent-child communication
promoting literacy
healthy relationships
Positive discipline, boundaries, limit setting, family routines
health & wellness
Age, geographic or situation focused groups:

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parents of young children
parents whose children are being removed
parents of teens
grandparents raising grandchildren
Couples
Moms or Dads
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Parent Education & Support Groups
Use of Evidence-based Curricula:

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Health & Wellness – Alexander Tymchuk
Nurturing Parent – Alexander Tymchuk
Family Game – Maurice Feldman
Sunny Side of the Street - Iris Media
Supplemental Materials:
 Channing Bete scriptographic booklets
 Activity or Game-based learning – Bingo, flash cards, role play
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Parent Education & Support Groups
Logistical Support to Enhance Participation:
 Reminder calls
 Transportation
 Child care
 Incentives for attendance and active involvement
Welcoming Environment:
 Sharing time
 Snacks or meals
 Located in family friendly settings with community
connection
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Funding
Parent Education & Support Groups
•
•
•
•
•
•
•
•
Private grant for initial needs study
Children’s Trust Fund
Community Foundations
United Way
Women’s Fund
Agency on Aging Funds (grandparents groups)
Dept. of Children & Families (approved but not yet funded)
Local community grantors (hospitals)
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Funding
Parent Education & Support Groups
– supplemental support
• Small local grants – for transportation & child care costs,
special events such as family dinners & picnics
• Community Partnerships – Literacy Centers and Family
Centers for use of space & child care
• Food pantries, church donations & individuals - for materials
& children’s activities, games, food
• AmeriCorps – child activities & program support
• College interns/Volunteers – child care and
transport volunteers, co-facilitators
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Home Visiting & Parenting Skills Training
Address pressing issues/priorities of parent
Focus on parenting/family life skills training


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child development
infant/toddler care
child discipline
home safety & basic first aid
nutrition & meal planning
health care & wellness, hygiene, stress & anger
management
 social boundaries & healthy relationships
 household management, organization and cleanliness
 family budgeting, money management, resources
Offer Case Management & Service Coordination
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Funding
Home Visiting & Parenting Skills Training
•
•
State Funding:
Dept. of Children & Families (child protection)
Dept. of Developmental Services (disability)
Private & Other Public Funding:
Community Foundations (private)
Area Agency on Aging (federal)
United Way (community fund)
Block Grants (federal through towns)
Private Foundations & Donors
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Transitional Supported Living
 Focus on stabilization and reunification
 Apartment model – 5 apartments for families
 Supportive neighbor and office located in
building
 Intensive Support – individual support from
parent educators, on-site supportive neighbor,
parenting group on-site
 Monthly meetings & family events
 Children’s activities & play yard
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Funding
Transitional Supported Living
Start up: State Arc Grant from private foundation for
start-up and pilot of program
Ongoing:
 Dept. of Children & Families refers
families for 1-2 years
participation;
DCF pays monthly fee per family
 Families have housing subsidies
 AmeriCorps member provides children’s support
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Volunteer Mentoring
Family Friends
 Individualized family support by fostering &
supporting long-term voluntary relationships
 Focus on community connections
 Focus on expanded opportunities & experience
 Experienced volunteers share wisdom & gain
relationship with new family: “win – win”
experience
 Focus on current wellbeing of family
and future wellbeing of children
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Funding
Volunteer Mentoring – Family
Friends
Start up: Multi-year grant from
National Council of Aging to
promote elder volunteerism
Ongoing: Coordinator position written
into multiple grants, i.e.
 Community Foundations
 United Way
 Title III – Area Agency on Aging elder services
 Private grants
 Also approved program model by DCF under Family Support &
Stabilization but not yet funded
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FY12 Funding & Program Status
 Individual Parenting Support/Skills Training –
Approximately $200,000 in state DCF funds
 Parent Education & Support Groups (combined with
home visiting) - $70,000 from 5 grants
 Family Friends & Grandparent Support - $19,000 from 2
grants
 Transitional Supported
Living Program - $90,000 from
state DCF funds
Serving approximately 100 Families
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LINDSAY, PHIL, JULIANNA
AND SARA
ONE SUCCESSFUL
FAMILY
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My Family
Phil Julianna Lindsay and Baby Sara
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Introduction
Why I do this?
What inspired me to do what I do?
A parent's love is whole no matter how many times
divided. ~Robert Brault, www.robertbrault.com
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Tips for parents that have a
disability
• Having a pretend baby
•
Having a role model that is a
parent
Parenting
•
Having a team that will support
you
•
It is not always easy we all
struggle!
“Remember to hug your children
and tell them that you love them
every day” Vinnie Politan HLN
Reporter
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Tips for parents that have a
disability that also work with
a support person
Let them know your wants
and needs for them
Make sure there supportive
towards you
Interesting fact : There are 8
Million people in the us that are
parents that have a disability
15% of all American parents
have a disability of some sort.
From the looking glass website
Your Children need your Presence
more than presents!-Jesse Jackson
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TASP WAS “BORN” ON May 28,
2009 at 4:47 PM in Louisville, CO
Many cups of coffee, soda and munchies were
consumed during the grueling ordeal of choosing
just the right name! The Tag Line says it just
right!
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OUR MISSION
TASP is dedicated to enhancing the
well-being of at-risk parents with
learning difficulties and their children.
This primarily includes parents who may
be identified as persons with intellectual
disabilities or borderline intellectual
functioning.
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TASP’S GUIDING PRINCIPLES
 We accept that
separation from parents
is sometimes in the best
interest of children.
We recognized that
family life is complex.
We move forward in step
with self-advocates in
this shared work.
 We believed that our
expertise and resources
may also benefit parents
with other cognitive
challenges and the people
that support them.
We acknowledge that all
families need support and
rely on inter-dependent
network.
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How we operationalize our Mission
 Consulting with partners in child
 Facilitating community
welfare, early intervention,
partnerships and networking
education, health care, disability
 Offering educational opportunities
services and family support
 Partnering with self-advocates
 Working within interdisciplinary
 Promoting evidence-based
teams to individualize services
parenting skill assessments
 Establishing and raising quality
 Developing and endorsing evidence-
standards in assessment, training,
based curricula for training
service and research
 Honoring family autonomy, self-
 Promoting and conducting research
determination and parent
 Developing individualized supports
strengths
 Encouraging natural supports,
community acceptance and inclusion
that utilize evidence-based
38
practices
OUR ACCOMPLISHMENTS
Great name!
501-C3 Status
+ new website
4 successful
conferences
Dynamic Board
of Directors
Meeting with
The
International
Association for
the Scientific
Study of
Intellectual
Disabilities to
discuss
39
collaboration
TASP’S BOARD OF DIRECTORS
Executive Committee
Bernadette Irwin, Co-President,
The Kennedy Krieger
Institute/PACT: Helping Children
with Special Needs, MD
irwin@kennedykrieger.org
Sue Jones, Co-President, The
United Arc, MA
suejones@unitedarc.org
Ginny Cruz, Vice President,
Metropolitan State College of
Denver
Cruzv@mscd.edu
John Susa, Treasurer, Lifespan,
Inc, RI
john.susa@verizon.net
Ellen Gilmartin*, Secretary,
Connecticut Office for Protection
and Advocacy for Persons with
Disabilities , Membership
ellen.gilmartin@charter.net
Carol Boggs, Parent, Self Advocacy CoChair
Lindsay Brillhart, Parent
Self Advocacy Co-Chair
sparkles919@yahoo.com
Maurice Feldman, Research
Committee, Centre for Applied
Disability Studies, Ontario Canada,
Brock University
mfeldman@brocku.ca,
Lana Hardy, All About Developmental
Disabilities, Decatur, GA
lana@aadd.org
Leslie Kinney, Finance Committee,
The United Arc, MA
lesliekinney@unitedarc.org
Elizabeth Lightfoot, Nomination/By-laws,
U. of Minnesota
elightfo@umn.edu
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Susan Yuan, Public Policy/Advocacy,
University of Vermont
syuan@uvm.edu
Carolyn Harpole, Ph.D., Psychological
Association of Bartlesville, OK
carpsych@aol.com
Sylvia Long, Director, Office of the
Public Defender, MD.
sylvialong@yahoo.com
Catherine Wade, Parenting Research
Centre,East Melbourne, Victoria 3002
cwade@parentingrc.org.au
WHO’S WHO IN SUPPORTED
PARENTING……
 Tim and Wendy Booth - - from the UK – now retired
but have published many relevant works
 Maurice Feldman, Ph.D. (TASP Board Member) – Brock
University, CA – recent publication on Assessment +
many research articles
 Catherine Wade, Ph. D. (TASP Board Member) Parenting
Research Center, Melbourne, AU
(www.healthystart.net.au)
 Alexander Tymchuk Ph.D. “Father” of the Supported
Parenting philosophy in the U.S.
 Virginia Cruz PH.D. (TASP Board Member) Creator of A
Fair Chance video
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Even more great leaders/authors!
 David McConnell Ph.D. University of Alberta, CA
 Gwynnyth Llewellyn Ph.D. University of Sydney, AU
Articles by TASP members include….
 Irwin, B., New Ways of Thinking About Parents with Intellectual Disabilities, Impact,
Spring/Summer 2010, U. of MN, Minneapolis, MN –
http://ici.umn.edu/products/impact/232
 http://www.eparentdigital.com/nxtbooks/exceptionalparent/201202/index.php
Article by two TASP members – Lindsay Brillhart and Susan Yuan
 http://www.people.com/people/article/0,,20314177,00.html
Fleming, A, “Mommy is Always There for Me”
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The Association for Successful Parenting:
Enhancing the lives of families when parents
have learning difficulties
www.achancetoparent.org or .com
Email us at
achancetoparent@gmail.com
Phone: 1-855-22-8277
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SO….WHAT NEXT?
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Who are parents with
intellectual disabilities?
• Parents with intellectual or developmental disabilities have
various levels of cognitive impairment
• Intellectual disability occurs before 18 characterized by
significant limitations in intellectual function and adaptive
behaviors
• Mild cognitive limitations describe individuals who may have
had a diagnosis at some time in their lives (perhaps in school)
and have lower than average learning, communication, and
understanding abilities. Their eligibility for services varies
from state to state; they may not qualify for disability services.
• Parents with intellectual disabilities are typically no different
than others in their hopes and dreams for their families.
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Issues that
parents face
Social and social service biases:
• Presumption of incompetence, unfit to be parents
• Limited supports made available
• Professional emphasis on limitations (rather than building on
strengths)
• Public resources often focus on crisis, not long-term support
• May be lack of trust in service providers driven by fear of loss
of children
• Disproportionate representation in child custody hearings;
often held to higher standards than other parents
• Poverty, lack of personal resources and opportunities
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Effective Strategies: Key Principles
• Services need to be responsive to the parents’
individual needs & focus on the whole family
• Services must include long-term, ongoing
supports
• Services must consider special learning
needs of the parent
• Services must assist parents to
become part of their community
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Relationship to Protective Factors
•
•
•
•
•
Parental resilience
Social connections
Knowledge of parenting & child development
Concrete support in times of need
Social & emotional competence of children
48
Community Donors for Events,
Program and Family Needs
• Community Coalitions – for Family Day Dinners
• Hospitals – for health focus in parenting groups
• Cultural Councils – for themed events at Family Picnics and
special programming, i.e. “Drumming Circle,” children’s
performances and theater, literacy through spoken poetry,
children’s photography workshops
• Churches – for supplies, materials, food, holiday gifts
• Private Donors – for children’s winter wear , playground
equipment, holiday gifts
• Civic groups, women’s groups, businesses,
school groups – for school supplies, food,
clothes and holiday gifts
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Funder Priorities & Program Needs
Supported Parenting/Family Support
fits into an array of concerns:
• Parent Disability & Early
Intervention
• Child Welfare
• Family Health &
Maternal & Child Health
• Literacy/School Readiness
• Welfare-to-Work
• Self Advocacy
• Women, Men, Children
•
•
•
•
•
Transition
Child abuse prevention
Children in Foster Care
Volunteerism
Families challenged by
mental health, substance
abuse, poverty issues, etc.
• Multigenerational &
Non-traditional families
• And more…
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Approaching Funders & Donors
Goal is to match your program needs or aspects of the
program to Donor Interest.
Research grants can document need.
Start-up or pilot grants often demonstrate
efficacy of a service or program model
to future funders.
Build partnerships during needs assessment & funding
research. Participate in community coalitions.
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Additional Programs & Resources
•
•
•
•
The United Arc Resource Guide
The Arc
The Association for Successful Parenting (TASP)
Through the Looking Glass (TLG) – National Resource
Center for Parents with Disabilities
• The Connecticut Parents with Cognitive Limitations
Workgroup
• AAIDD & IASSID
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