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

1. 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 Sue Jones Co-President of TASP Co-President of TASP irwin@kennedykrieger.orgsuejones@unitedarc.org Lindsay Brillhart TASP Board Member – Chair of Self-Advocacy Committee sparkles919@yahoo.com

2. 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

3. TWO PROGRAM MODELS Bernadette Irwin, The Growing Together Supported ParentingProgram in Baltimore, MD at PACT: Helping Children with Special Needs Sue Jones, Positive Parenting Program of the United Arc, Greenfield, MA

4. GROWING TOGETHER Bernadette Irwin, The Growing Together Supported ParentingProgram in Baltimore, MD at PACT: Helping Children with Special Needs

5. 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.

6. How are we funded? 100 % from MD Developmental Disability Administration (DDA) for 18 families

7. 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)

8. Another interesting fact…. The majority of children born to parents with intellectual disabilities are born with normal IQs.

9. 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) GROWING TOGETHER

10. 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

11. 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

12. 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

13. POSITIVE PARENTING PROGRAM Sue Jones, Positive Parenting Program of the United Arc, Greenfield, MA

14. Fitting the Pieces TogetherSupporting Parents with Intellectual and Developmental Disabilities The United Arc’s Positive Parenting Program

15. 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

16. 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

17. 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

18. 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

19. 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

20. 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

21. 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)

22. 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

23. Home Visiting & Parenting Skills Training Address pressing issues/priorities of parent Focus 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

24. 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

25. 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

26. 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 years participation; DCF pays monthly fee per family Families have housing subsidies AmeriCorps member provides children’s support

27. 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

28. 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

29. 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

30. LINDSAY, PHIL, JULIANNA AND SARA ONE SUCCESSFUL FAMILY

31. My FamilyPhil Julianna Lindsay and Baby Sara

32. 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

33. 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

34. 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

35. 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!

36. 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.

37. 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.

38. 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

39. OUR ACCOMPLISHMENTS

40. TASP’S BOARD OF DIRECTORS

41. 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

42. 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”

43. 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

44. SO….WHAT NEXT?

45. 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.

46. 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

47. 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

48. Relationship to Protective Factors • Parental resilience • Social connections • Knowledge of parenting & child development • Concrete support in times of need • Social & emotional competence of children

49. 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

50. Funder Priorities & Program Needs Supported Parenting/Family Support fits into an array of concerns: 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… • Parent Disability & Early Intervention • Child Welfare • Family Health & Maternal & Child Health • Literacy/School Readiness • Welfare-to-Work • Self Advocacy • Women, Men, Children