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The Arc of Virginia, Family Involvement Project Helping Families with Children with Special Needs.

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Presentation on theme: "The Arc of Virginia, Family Involvement Project Helping Families with Children with Special Needs."— Presentation transcript:

1 The Arc of Virginia, Family Involvement Project Helping Families with Children with Special Needs

2 The Arc of Virginia Vision People with intellectual and related developmental disabilities are valued as classmates, coworkers, neighbors, citizens and friends.

3 The Arc of Virginia advocates for individuals with intellectual and developmental disabilities and their families, so they may all lead productive and fulfilling lives.

4 The Arc of Virginia is governed by a Board of Directors. Officers are elected by representatives of the local Arc chapters.

5 State Office Executive Director Jamie Trosclair 2025 East Main Street Suite 107 Richmond, VA 23223 Phone: (804) 649-8481 Fax: (804) 649-3585 Web: CapWiz

6 The Family Involvement Project In an effort to strengthen and increase family involvement in Virginia's early intervention system, Virginia’s lead agency, the Department of Mental Health, Mental Retardation and Substance Abuse Services, funds the Family Involvement Project, which is housed at The Arc of Virginia.

7 All of the Family Involvement Project staff are parents of children who either have received or are receiving early intervention services. We are all aware of the importance of being able to connect with another parent in a similar situation.





12 Our staff is committed to serving families and providers in Virginia. Join us as we all work together to make The Infant & Toddler Connection of Virginia even better!The Infant & Toddler Connection of Virginia

13 Purpose: The Family Involvement Project’s purpose is to provide ongoing training and technical assistance to local councils, families and providers on strategies to enhance family involvement, as well as share families’ perspectives on service delivery strategies in Virginia’s early intervention system.

14 The Family Involvement Project currently focuses on four areas of Virginia’s early intervention system. These areas are:

15 1. General Supervision and Monitoring System To ensure that local early intervention services are in compliance with State and Federal requirements, families and providers worked together to develop the General Supervision and Monitoring system. Parents can be involved with this process either in their own locality or at the state level.

16 2. Local Parent Involvement Strengthening and increasing diverse family involvement with the 40 local interagency coordinating councils.

17 The Family Involvement Project staff encourages and facilitates participation of families on the local level by encouraging councils to identify a Local Parent Representative. These parents are “resource parents” to families receiving services in their community.

18 3. Family Representation Project staff works to collaborate with and represent family interests, issues, perspectives and concerns to the Early Intervention Interagency Management Team, Virginia Interagency Coordinating Council, including participation in standing committees as well as special projects and work groups.

19 4. Parent-to-Parent Ensuring Parent-To-Parent support is available to all families receiving services from The Infant & Toddler Connection of Virginia.

20 Parent to Parent is based on the philosophy that families can be helped by trained, supporting parents when they: Experience the birth of a child with special needs Discover that their child has a disability Are navigating through a crisis

21 Our goal is that, if they choose to, as soon as possible after a parent learns of their child's diagnosis, they are put in touch with a trained volunteer parent partner whose child has the same or a related disability.

22 This "veteran" parent who has “been there" can open the door to the processes of grief, acceptance and support by offering emotional support, understanding and factual information about a child's disability.

23 Helping a family define and strengthen their role as the primary caregiver for a child with special needs

24 When a family learns they have a child has a disability, there will be a change in their outlook and expectations of family life. They are required to make decisions they never expected to make.

25 Recognizing the Grief Cycle

26 Stages of Grieving Process Shock/Denial (a way of self protection) Bargaining (looking for miracle cures) Anger (sometimes projected on friends and family) Guilt/Shame/Depression/Hopelessness Acceptance (begin to build new dreams and goals)

27 Using People First Language

28 “The difference between the right word and the almost right word is the difference between lightning and the lightning bug.” Mark Twain People First Language Hot Words

29 Identifying Their Role

30 1. Defining their role as a parent  Families should help the other team members to see their child and family as they do  Families should give the other team members the information that they need to help their child succeed

31 Families need to learn about everything the system offers and is required to offer Families should make sure their child & family benefit from all of the knowledge and experience of the other team members

32 2. Setting the Stage for Success Be Responsible. As a member of any team you should expect to both give and receive respect. Trust is something that is earned.

33 Realize that you will not always be on the winning “side” of a discussion. Always remain open to persuasion.

34 Try to see things from someone else’s perspective as well as helping them to see it from yours. Don’t over-prepare for meetings.

35 3. Effective Team Member Respect Open to Persuasion Cooperates Good Listener Plan Ask Questions

36 4. We Disagree… Choose Your Battles Taking A Stand Letting Go

37 Reasons to Advocate

38 Why Do Families Need to Be Involved? Family experiences and perspectives provide the source material that can lead to necessary change. Providers often acknowledge that listening to personal stories of individual families helps them make better informed decisions. Families are the constituency who can most effectively organize and mobilize action!

39 The best person to identify a consumers need is the consumer! Parents can say things providers can not Parents help to keep the group focused and driven When a parent talks people listen

40 Opportunities to Become Involved in Early Intervention There are all levels of involvement. Sharing and gathering information to make good decisions for your child and family Attending or becoming a member of your Local Interagency Coordinating Council Becoming a Local Parent Representative Attend a Parent Partner Training to be matched with a family entering early intervention services

41 Be available to provide feedback on local and state documents and procedures Virginia Interagency Coordinating Council participation Become a member of a state early intervention workgroups and committees

42 Playgroups Workshops: parent education, transition to preschool Support Groups Parent-to-Parent support Systems Respite care LICC Community Activities (Miracle League, Special Olympics)

43 Guidelines for Success! Reach out to family members Host celebrations and educational events that families want to attend Tell families what to expect Support families for consistent and effective participation

44 State Workgroups and Committees Child and Family Advisory Committee Infant and Child Mental Health Committee Integrated Training Collaborative Virginia Early Hearing Detection and Intervention VICC Advocacy Committee Visit and click on calendar or contact Debra Holloway at 888-604-2677 ext. 103 or

45 How to Become a Member or Get Concerns to a Family Representative Debra Holloway Family Involvement Project Manager The Arc of Virginia 2025 East Main Street, Suite 107 Richmond, VA 23223 (888) 604-2677 ext. 103

46 Natalie Fleet Family Involvement Project Tidewater Region Parent Representative The Arc of Virginia 2025 East Main Street, Suite 107 Richmond, VA 23223 (888) 604-2677

47 Heidi Faustini Family Involvement Project Parent-to-Parent Coordinator The Arc of Virginia 2025 East Main Street, Suite 107 Richmond, VA 23223 (888) 604-2677 ext. 105

48 Carol Hagen Family Involvement Project Northern Virginia Region Parent Representative The Arc of Virginia 2025 East Main Street, Suite 107 Richmond, VA 23223 (888) 604-2677 ext 104

49 Website: List serve membership contact: Debra Holloway (888) 604-2677 ext. 103

50 Stipends for Parent Involvement A parent stipend has been developed to offset expenses (such as child care) for parents serving on the Virginia Interagency Coordinating Council (VICC), VICC committees, ad hoc work groups, and/or other short term early intervention groups or committees sponsored by the state. Parents who are members of such committees or groups may claim $75.00 for every eight hour block of time that he/she participates in meetings.

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