Working Together for Families State Stories

States reported a broad range of strategies and activities that work for them based on the needs of families in their states, their state’s characteristics, and their projects’ resources. Let’s look at some examples— Maryland, West Virginia, and Montana.


State Deaf-Blind Project: Connections Beyond Sight and Sound (CBSS)
Parent Center: Parents’ Place of Maryland (PPMD)

Submitted by
Donna Riccobono, Project Director of CBSS
Jeni Stepanek, Education Specialist at CBSS

At Connections Beyond Sight and Sound (CBSS), our goal is to improve outcomes for children with deaf-blindness in the Maryland and Washington, DC area. Among other services, we provide education and support to families. Our collaborative work with Parents’ Place of Maryland (PPMD) makes it possible to expand the learning and social opportunities that benefit our families.

Screenshot of a flyer for a family learning weekend.

Educational Programs 
CBSS works with PPMD to help them conduct one of their most popular annual educational opportunities, the Special Education LEADers Training Program, offered at no cost to parents and family members throughout the state. During six monthly workshop sessions, participants explore topics such as special education law, effective advocacy, the IEP process, and dispute resolution. PPMD returns the favor by supporting the CBSS annual Family Learning Weekend. This year’s event was spectacular! Held in September in Columbia, Maryland, the weekend was well attended and earned great reviews by both participants and presenters. 

Family Fun Activities
We also team with PPMD to help families make connections with each other and have fun. A recent example was “Family Day at the Farm,” held in May 2015. Children with deaf blindness and/or multiple disabilities from Maryland, DC, and Virginia were able to experience a farm, pet small and large animals, feed ducks, ride a horse, and much, much more. 

In addition to providing programs and activities that support our families, a CBSS staff member participates as a member of the Board of Directors for PPMD and a PPMD staff member serves on the CBSS Advisory Committee. What makes our partnership with PPMD work is our mutual respect and excitement about working for and with families. Each year, we continue to meet new families who are dealing with challenges related to deaf-blindness. And each year we will continue to do all we can to improve the outcomes for their children, through our CBSS project activities and collaborative work with dedicated partners. 

West Virginia

State Deaf-Blind Project: WV SenseAbilities Project
Parent Center: WV Parent Educator Resource Center (PERC)

Submitted by
Ruth Ann King, Project Coordinator/Family Specialist, WV SenseAbilities Project

The WV Parent Educator Resource Center (PERC) and the WV SenseAbilities Project are both based at WV Department of Education (WVDE). Having a common home agency provides a foundation for a high level of collaboration. 

PERC works with families, educators, and other service providers via partnerships with local education agencies in 37 counties. A team, consisting of a parent of a child with special needs and an educator, staffs each local PERC. The services they provide include parent information, resources, and training; individualized assistance to help parents better understand their children’s educational needs; and training for educators to increase their skills, knowledge, and attitudes related to strengthening family involvement and positive school-to-home partnerships. PERC has a state level coordinator who attends the WV SenseAbilities Family Learning Weekend to address individual family needs and coordinates collaborative efforts among organizations and agencies that serve families in West Virginia.

The WV SenseAbilities Project collaborates with PERC to meet the needs of families of children who are deaf-blind in the following ways: 
  • Contributes to the annual PERC conference by providing information and presentations about sensory impairments 
  • Provides links to relevant websites, webinars, and articles that families can access through their local PERCs 
  • Provides training in sensory loss for families and teams 
  • Assists in recruiting individuals who have backgrounds in deaf-blindness to work at the local PERCs (currently this includes two parents and one grandparent of children who are deaf-blind)

Logo for camp gizmo. Bright colors with arrows and gadgets creating the word gizmo.

One of the most exciting and fun activities on which the two agencies collaborate (along with numerous other state organizations) is Camp GIZMO, a five-day summer camp focused on assistive technology for children, birth to 8 years old, who experience significant and multiple developmental needs, including deaf-blindness.  Camp GIZMO is a wonderful event for children, families, and professionals, where children participate in a daily fun activities, while professionals and families attend workshops and labs.


Parent Center: Parents, Let’s Unite for Kids (PLUK)
State Deaf-Blind Project: Montana IDEA Services for Children and Young Adults with Deaf-Blindness Project

Submitted by
 Ellen Condon, Project Director
Montana IDEA Services for Children and Your Adults with Deaf-Blindness Project

In Montana, collaboration between the parent center (PLUK) and the state deaf-blind project is fostered by personal connections. I’ve known two of the PLUK staff members--Mary Hall and Theresa Baldry--for more than 15 years. 

Most of our work together focuses on helping specific children. We pool our resources and take advantage of each other’s areas of expertise. It’s nice to have two people assess the same child and situation and come up with creative solutions. This is especially helpful for children who have complex needs. For example, Theresa, who is based in Miles City, is great with technology. I contact her when I need advice about tech for specific students. Mary is amazingly knowledgeable about the law, and together, she and I have leveraged our collective expertise to schools and families related to transition planning. 

The personal relationships we have developed over the years are what make our collaboration work. We really like each other and enjoy working together. There are a couple of factors that I think that led to the development of these relationships. First, as noted above, we each have strong areas of expertise. In addition to my role as the director of the deaf-blind project, I also direct projects that focus on transition planning for students with intensive support needs. I first met Theresa and Mary when they contacted me with questions related to transition, both for the families they serve and for their own sons with disabilities. 

Second, personal connections are crucial in a state the size of Montana. When you have a service that covers a specific content area, as both our state deaf-blind project and the parent center do, you travel a lot and must rely on each other for connections in communities that are unfamiliar to you. 

Although our approach is informal, it works well for us and I think we will be able to expand this style of working together in the future. Currently, much of our collaboration is centered around transition-age students and employment, but I hope that going forward we can forge new connections with parent center staff related to younger students and new topics.

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