Webinar presented on April 12, 2012 for the Arc by: Bernadette IrwinSue Jones

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Webinar presented on April 12, 2012 for the Arc by:

Bernadette Irwin Sue JonesCo-President of TASP Co-President of [email protected] [email protected] Lindsay Brillhart

TASP Board Member – Chair of Self-Advocacy Committee

[email protected]

THE ASSOCIATION FOR SUCCESSFUL PARENTING: ENHANCING THE LIVES OF FAMILIES WHEN PARENTS HAVE LEARNING DIFFICULTIES

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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

GOALS FOR TODAY….

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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

TWO PROGRAM MODELS

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Bernadette Irwin, The Growing Together Supported Parenting Program in Baltimore, MD at PACT: Helping Children with Special Needs

GROWING TOGETHER

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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 environments for their children.

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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 intellectual disabilities (ARC of Maryland)

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Another interesting

fact….

The majority of children born to parents with intellectual disabilities are born with normal IQs.

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GROWING TOGETHER PARENT

COMPONENT Group Sessions Peer Support and

Socialization Social Work

Counseling Referral to community

resources Transportation to/from

program

CHILDREN’S COMPONENT

Child-focused activities Developmental

assessments On-site physical,

occupational, speech/language therapy and special instruction, as needed (through the Baltimore City Infants and Toddlers Program)

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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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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

WHAT WE TELL OUR PARENTS ABOUT PLAY….SENC

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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

Resources that we use….

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Sue Jones, Positive Parenting Program of the United Arc, Greenfield, MA

POSITIVE PARENTING PROGRAM

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Fitting the Pieces TogetherSupporting 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 Visionwhich 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: 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: 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: 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 involvementWelcoming Environment: Sharing time Snacks or meals Located in family friendly settings with community

connection

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FundingParent 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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FundingParent 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 parentFocus on parenting/family life skills training 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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FundingHome 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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FundingTransitional 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 yearsparticipation; DCF pays monthly fee per family

Families have housing subsidies AmeriCorps member provides children’s support

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Volunteer MentoringFamily 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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FundingVolunteer 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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ONE SUCCESSFUL FAMILY

LINDSAY, PHIL, JULIANNA AND SARA

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My FamilyPhil 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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Parenting

Tips for parents that have a disability

• Having a pretend baby

• Having a role model that is a parent

• 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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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!

TASP WAS “BORN” ON May 28, 2009 at 4:47 PM in Louisville, CO

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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 intellectualdisabilities or borderline intellectual functioning.

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TASP’S GUIDING PRINCIPLES

We recognized that family life is complex.

We move forward in step with self-advocates in this shared work.

We acknowledge that all families need support and rely on inter-dependent network.

We accept that separation from parents is sometimes in the best interest of children.

We believed that our expertise and resources may also benefit parents with other cognitive challenges and the people that support them.

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How we operationalize our Mission

Facilitating community partnerships

and networking

Offering educational opportunities

Partnering with self-advocates

Promoting evidence-based parenting

skill assessments

Developing and endorsing evidence-

based curricula for training

Honoring family autonomy, self-

determination and parent strengths

Encouraging natural supports,

community acceptance and inclusion

Consulting with partners in child

welfare, early intervention,

education, health care, disability

services and family support

Working within interdisciplinary

teams to individualize services

Establishing and raising quality

standards in assessment,

training, service and research

Promoting and conducting

research

Developing individualized

supports that utilize evidence-

based practices

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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 collaboration

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TASP’S BOARD OF DIRECTORS

Executive Committee

Bernadette Irwin, Co-President, The Kennedy Krieger Institute/PACT: Helping Children with Special Needs, [email protected] Sue Jones, Co-President, The United Arc, MA [email protected]

Ginny Cruz, Vice President, Metropolitan State College of Denver [email protected]

John Susa, Treasurer, Lifespan, Inc, [email protected]

Ellen Gilmartin*, Secretary, Connecticut Office for Protection and Advocacy for Persons with Disabilities , Membership [email protected]

Carol Boggs, Parent, Self Advocacy Co-Chair

Lindsay Brillhart, ParentSelf Advocacy Co-Chair [email protected]

Maurice Feldman, Research Committee, Centre for Applied Disability Studies, Ontario Canada, Brock [email protected],

Lana Hardy, All About Developmental Disabilities, Decatur, GA [email protected]

Leslie Kinney, Finance Committee, The United Arc, MA [email protected]

Elizabeth Lightfoot, Nomination/By-laws, U. of Minnesota [email protected]

Susan Yuan, Public Policy/Advocacy, University of Vermont [email protected]

Carolyn Harpole, Ph.D., Psychological Association of Bartlesville, OK [email protected]

Sylvia Long, Director, Office of the Public Defender, MD. [email protected]

Catherine Wade, Parenting Research Centre,East Melbourne, Victoria 3002 [email protected]

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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

WHO’S WHO IN SUPPORTED PARENTING……

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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”

Even more great leaders/authors!

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www.achancetoparent.org or .com

Email us at [email protected]

Phone: 1-855-22-8277

The Association for Successful Parenting: Enhancing the lives of families when

parents have learning difficulties

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SO….WHAT NEXT?

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. 45

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

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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 NeedsSupported 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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