3 Ps of Parent Support Partnership for People with Disabilities Parent to Parent PEATC

Our Role Today and Beyond… To understand how families enter into relationships with schools and providers, we need to appreciate how each parent takes in information, what and who are their trusted resources, and ultimately what factors most impact their decision-making.

What the Research Says About Families of Children with Disabilities… Parents rely heavily on the internet and other parents of children with disabilities to gain an understanding of what they observe with their child consult with other members of their family (primarily the child’s grandparents) to see if there are patterns of child development that run in the family make decisions based on cultural beliefs and traditions Dinora & Bogenshutz (2014)

A Disconnect? School and agency personnel may approach children with a sense of formality and focus on intellectual development Parents may view their child in holistic and personal ways Holisitic refers to multi-dimensions – physical, emotional, mental, spiritual. We are complex beings beings whomdraw on inner and outer resources These differing outlooks can set parents and schools and/or providers on separate paths ending in distrust and conflict Hong (2012)

A Disconnect? School and agency personnel may approach children with a sense of formality and focus on intellectual development Parents may view their child in holistic and personal ways Holisitic refers to multi-dimensions – physical, emotional, mental, spiritual. We are complex beings beings whomdraw on inner and outer resources These differing outlooks can set parents and schools and/or providers on separate paths ending in distrust and conflict Hong (2012)

Dinora & Lynch (2015)

Things We Can Change (Parents) Knowledge Behaviors Beliefs Knowledge (understanding of rights, special education processes) Behaviors (collaboration, negotiation, team process, advocacy) Beliefs (about ability to provide valuable input)

Things We Can Change (School/Agency) Teacher/Provider confidence Behaviors School/Agency communication Teacher confidence (ability to set goals and hold high expectations for children with disabilities) Behaviors (providing information, training and resources to parents to enable them to participate effectively in educational settings) School Communication (timeliness, receptivity to input, pre/post IEP, invitations to participate in problem-solving around child’s challenges)

Things We Can Change (Parent-School/Agency) Collaboration Communication Partnering Collaboration (mutual trust, valuing each other’s input, respect) Communication (meaningful 2-way communication re: student learning, school activities, etc.) Partnering (parents involved as equal partners) School personnel and parents each fear criticism from the other and often isolate themselves They can be haunted by past negative experiences Children are the ones who feel this tension between families and their schools the most. When we ignore families, we send a message to their children that we are not interested in their lives; that their parents are not important or necessary in educating their child Need to erase the culture that keeps parents at a distance that feels safe and comfortable to school personnel – how do we do this? Next slide…

Partnership for People with Disabilities Since 1985, the Partnership has been providing training and technical assistance to individuals, families, and professionals on best practice in supporting people with developmental disabilities Virginia’s only federally recognized UCEDD (university center of excellence in developmental disabilities) www.partnership.vcu.edu The Partnership is one of 67 University Centers for Excellence in Developmental Disabilities in the US. We are the only UCEDD in Virginia. We have about 100 staff – almost 50% are parents or individuals with disabilities. Our office is a few blocks from the state capital in downtown Richmond. We also have staff scattered throughout many regions of the state. We currently operate 35 or so federal and state funded projects.

Some key initiatives include: Professional development for early intervention providers and early childhood paraprofessionals ACE IT in College Person-Centered Practices Department of Education T-TAC for Regions 1 & 8 Positive Behavior Support Facilitators Center for Self-Advocacy Leadership Early Childhood Mental Health; Project SEEDS Center for Family Involvement Severe Disabilities Consortium Abuse & Neglect; Project LEAP Virginia DeafBlind Project / TA Center for Deaf/hard of Hearing

Center for Family Involvement MISSION The Center for Family Involvement works with families to increase their skills as advocates, mentors, and leaders so families, and children and young adults with disabilities, can lead the lives they want. VISION Every family of a person with a disability, together with the professionals who work with them, embraces the family’s role in improving the lives of people with disabilities. Families become: advocates who speak with and for their family members with disabilities; mentors who use what they have learned to help others; and, leaders who make possible a better life for those who follow. So, we are here to talk about the Center for Family Involvement, or CFI. We currently have $650,000 in funding from state and federal contracts. Here are the mission and vision of the CFI. Our goals are fairly simple – to have an administrative structure in place to support families in their roles as advocates, mentors and leaders a statewide Family to Family Network in place to assist families in their efforts to obtain needed information, supports and services, and to become leaders in policy development To work collaboratively with state and local agencies/organizations to build capacity for family involvement The values which we cannot stress enough in our staff, partners, materials and our trainings are: family wisdom, muticultural diversity, collaboration, leadership and self-determination.

Parent to Parent Support 1987 Started Parent to Parent of Richmond 1994 Started Parent to Parent of Virginia 1994-2005 Led 5 family support systems change initiatives 2005 Formed the Center for Family Involvement

Whom am I? Special Education 21 Years of experience with Community Services Boards in Virginia and South Carolina Son accessed Early Intervention as a toddler and currently has 504 Daughter accessed Early Childhood Education for Speech Therapy Currently the Director of the Family to Family Network of Virginia

Family to Family Network of Virginia Northern Virginia Northern Neck Piedmont Richmond (State and Cultural ) Hampton Roads (military) Tri-Cities (military) Roanoke our direct support to families -- our Family to Family Network of Virginia. 1 full-time Network director and 7 part-time paid parent staff coordinate local networks in the following areas: Central Va includes: Charles City, Chesterfield, Goochland, Hanover, Henrico, New Kent, Richmond and Powhatan. Hampton Roads includes: Gloucester, Hampton, James City County, Mathews, Newport News, Williamsburg, York Piedmont includes: Albemarle, Charlottesville, Fluvanna, Greene, and Louisa Tri Cities includes: Ft. Lee, Colonial Heights, Dinwiddie, Hopewell, Nottoway, Petersburg, Prince George Southwest (Roanoke) includes: Bedford, Botetout, Christiansburg, Lynchburg, Roanoke City and County, Salem, Southwest (Bristol) includes: Bland, Bristol,. Buchanan, Carroll, Dickerson, Grayson, Lee, Russell, Scott, Smyth, Tazewell, Washington, Wise, Wythe Our Network has trained over 200 volunteers (called family navigators and cultural brokers) and we are in the process of recruiting and training volunteers for a late February training. We are reopening a northern VA office in late 2016 near the Warrenton area IN addition, the F2F Network is supported by 5 cultural brokers working with african American, asian, latino, politcal asylee, and refugee communities; a military liaison and a rural outreach specialist. And, we have 3 disability specific liaisons to the mental health, autism, and deaf communities. The stars denote their locations The CFI also has a part-time Director, evaluator and two social media/communication specialists, bringing our total staff to 20 Bristol (877) 567-1122  

How can a Family Navigator help a family? A Family Navigator can provide: unbiased information, referral and linkages to supports and services for your child and family one to one support for your family, including access to cultural brokers and disability specific liaisons support in planning for service meetings an Individualized Parent Education & Empowerment Plan (IPEEP)   Family Navigators work in collaboration with local agencies and many participate on planning and advisory committees to provide a family perspective on policies and programs for children with disabilities.    Family Navigators do not provide legal advice, counseling, or advise families on decisions pertaining to their children. They do provide support and information, and discuss options with families so they can make the best choices for their children.

What are Cultural Brokers? Cultural Brokers are specific to immigrant, refugee and/or racial/ethnically diverse populations (Asian, African American, Latino, Refugee) The primary role of Cultural Brokers is outreach to organizations and groups in Virginia (and country) with whom the CFI (and the Partnership for People with Disabilities) should partner with to meet the needs of culturally and linguistically diverse families with children with disabilities.  

Let’s Follow a Call…  Call comes in to toll free line or an email comes directly to Local F2F Network Coordinator Within 48 hours, the LNC connects with the family and gets basic information (like an ‘intake’) that is entered into our database (called Salesforce) Depending on nature of support requested or family’s needs, LNC may match family with a Family Navigator Within 48 hours, the FN contacts the family to provide emotional, informational and/or systems navigational support The FN documents the support and resources provided to the family for the LNC The LNC enters that information into Salesforce and sends a link to an on-line satisfaction/impact survey

What we Heard from Families 54% white 25% african american 10% hispanic 7% asian/islander/ other 4% unknown July 2015 – June 2016 1:1 support (over 1,600 hours) 499 families (unduplicated) 42 professionals Training 5,094 parents / professionals We had 612 duplicated families – meaning that some families contacted us repeatedly

What we Heard from Families 676 children in 499 unduplicated families Autism 45% Developmental Disability, Speech or unknown 23% ADHD 8% Deaf/Hard of Hearing 5% Multiple Disabilities/Genetic/Orthapedic 4% Intellectual Disability/TBI 4% Blind/Visually Imp 4% Other Health Imp 3% Mental Health 2% Learning Disabilities 2% Children’s disabilities

Top 3 Requests for Support Navigating/Accessing Systems (disability specific resources, support groups, behavior supports, evaluations, recreational ideas) Partnering with Professionals (leadership, cultural brokering, collaboration at planning table) Transition (guardianship, employment, college, independent living)