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Working Together for Families




Networking is the stage at which organizations are aware of each other and have a general understanding of what each does, but communication is limited and no joint decision making is taking place (Frey et al., 2006). There are no specific strategies associated with this very informal stage of interacting. Most state deaf-blind project-parent center pairs who responded to our request for information had already moved beyond this level.


Networking is the stage at which organizations are aware of each other and have a general understanding of what each does, but communication is limited and no joint decision making is taking place (Frey et al., 2006). There are no specific strategies associated with this very informal stage of interacting. Most state deaf-blind project-parent center pairs who responded to our request for information had already moved beyond this level.


At the cooperation stage, agencies are beginning to establish professional relationships (e.g., know each other well enough that they feel comfortable calling to ask for help) and communication is becoming more formal (Frey et al., 2006). They share information and exert some effort to limit duplication of similar resources. They are also gaining a better understanding of the services offered by each other’s organization and the strengths of their personnel. The strategies below illustrate interactions among state deaf-blind projects and parent centers that are consistent with this level.

Involve state deaf-blind project family specialists

Relationships between state deaf-blind projects and parent centers are often facilitated by state project family specialists. They can serve as a bridge between the two agencies.

Our deaf-blind project’s family specialists have had long-term relationships with the parent center, both personally and professionally. They attend parent center trainings, forums, and annual conferences and encourage other PA families to do the same. In addition, the project hosts a family listserv. The family specialist who moderates it disseminates parent center information and announcements on an ongoing basis. —Pennsylvania

Attend each other’s events

Attending events (e.g., workshops, parent weekends) provides opportunities to learn about the services of the other project and identify areas where collaboration is needed and likely to be beneficial.

Share materials

Sharing project materials, such as factsheets, brochures, and announcements, is an easy way to begin to work together and stay up to date on each project’s activities.


At the coordination stage, organizations consistently share information and resources in a way that increases their efficiency, thus reducing duplication of effort with respect to common goals. This involves some shared decision making and frequent communication (Frey et al., 2006). The strategies below illustrate examples occurring between state deaf-blind projects and parent centers that are consistent with this level.

Become involved in each other’s activities

This refers to involvement that goes beyond mere attendance. For example:

  • Giving a presentation at a workshop, conference, or family gathering for the other project
  • Providing meeting space (real or online) to hold a family training
  • Sharing audiovisual equipment
  • Co-sponsoring groups (e.g., in South Dakota, the two projects collaborated on the development of an adult siblings group)

As part of our efforts to identify children with deaf-blindness, three to five years of age, we’ve collaborated with the parent center to raise awareness on what to expect and sources of support for children with hearing or vision loss when transitioning from early intervention to preschool. — New York

Develop an in-depth understanding of what each project does

In order to partner with another organization, you need to have clarity about your common goals, activities, and resources (including staff members’ skill sets).

Gaining insight into the workings of each other’s projects has made us better TA providers. — New York

We have a better understanding of each other's project initiatives. This has an overall impact on families from both organizations through direct services, parent trainings, and teacher/educator professional development. — Ohio

Another factor to our success is having a true understanding of each other’s project and the services provided by the project. — Oklahoma

Meet Regularly 

In a number of states, deaf-blind projects and parent centers meet at least quarterly on a formal or informal basis to make plans and share information.

Frequent, open communication allows us to proactively identify and address the needs of families and service providers. —North Carolina

Disseminate news and materials 

There are a number of ways to disseminate materials for each other, including:

  • Link to the other project’s website from your website
  • Put their contact information on your publications
  • Disseminate their brochures and information in packets you send to parents and professionals
  • Post information about their upcoming events on your e-mail lists, website, and Facebook page

Example: The Oklahoma Parent Center director disseminates state deaf-blind project materials for the Oklahoma state deaf-blind project. This is extremely helpful for the deaf-blind project, which has just one employee and cannot attend multiple statewide meetings.


Make referrals 

Parent centers should refer all families who have a child with combined vision and hearing loss to their state’s deaf-blind project. State deaf-blind projects should refer families in need of information about parent advocacy, the law, health care systems, and similar topics to parent centers.

When calls and or questions come to the [parent center], each of the coordinators goes through a process of taking information and providing guidance and technical assistance as needed.  For questions related to deaf-blindness, each staff member knows to contact the director of the deaf-blind project. It truly is a continuous circle of collaboration and support. —Nebraska 

Provide staff development training 

Providing training to each project’s respective staff members can help increase awareness of their mission and services. This strengthens collaboration and, at a very practical level, helps staff members gain knowledge about when and how to refer families.

The state deaf-blind project provided inservice training for all parent center staff to give them a broader understanding of the needs of families of children with deaf-blindness. —Florida

Share expertise

In addition to benefiting from each project’s general areas of expertise (deaf-blindness at the state deaf-blind projects and advocacy and education law at the parent centers), collaboration can also occur in areas where staff have special skills or knowledge. This includes such things as fluency in languages other than English and specific topical knowledge. 

We benefit from each other's expertise. Theresa is amazing with technology. Mary is fantastic around the law and IEPs, and I know employment. —Montana

Our collaboration helped us determine how to reach out to Spanish speaking parents and provide information using culturally and linguistically appropriate methods. —New York


Collaboration is characterized by thorough communication based on mutual trust—organizations have established processes that drive and organize shared work and consensus is reached on decisions related to all joint activities (Frey et al., 2006). The strategies below illustrate examples occurring between state deaf-blind projects and parent centers that are consistent with this level.

Work together on activities to accomplish mutual goals

Working together on mutual goals involves first identifying shared goals and values. Examples of common goals include:

  • The family is the center of the team
  • Parents should be empowered to advocate for their children at state and local levels

[The MI parent center and state deaf-blind project] both believe supporting parents is the most important service we can provide. We also have a "we are better together" working agreement. — Michigan

Collaboration has enabled both [the parent center and the state deaf-blind project] to reach a wider range of local families and, therefore, engage more families in training and recreational opportunities. It has also increased the ability of families to network with each other. — Maryland

Involve other stakeholders

True long-term change in child outcomes requires collaboration among multiple organizations. Recognizing this, a number of parent center-state project pairs expand their collaboration to include other partners who share their goals and responsibilities to families. These other stakeholders might be early intervention, education, or community agencies also charged with meeting the needs of families. By identifying workscope commonalities, these organizations can collectively leverage their resources to have a greater impact.

Work together on state systems change activities 

Many states work together, typically with additional stakeholders, to influence service systems in their states related to such things as early intervention, transition, or health care.

Example: In North Dakota the state deaf-blind project, the parent center, and the PEPNET 2 Transition Team have worked together on numerous projects focusing on transitioning youth. These include participation in a transition community of practice, the development of a transition guide, and work on "Teen Night Out" activities in the Fargo, ND-Moorhead, MN area. A representative from the parent center spoke at the 2014 Transition Summit, a collaborative effort among the state deaf-blind project, the School for the Deaf, and the PEPNET 2 Team.

Develop a formal working agreement

Some SDBP-parent center pairs find it helpful to have a formal working agreement such as a memorandum of understanding (MOU) that outlines each project’s roles, commitments, and a plan for evaluating the collaborative relationship. 

Before we had the written MOU, we had challenges related to lack of clarity about the expectations of each other. We handled it by developing the MOU! — New Jersey

Develop strong professional and personal relationships

Literature on collaboration clearly shows that personal relationships are the cornerstone of successful partnerships (Gadja, 2004). Good relationships involve knowing each other’s strengths and getting to know each other as people.

We have a strong collaboration that is considered a friendship based on years of working together. We all know who to call or email. Our collaboration is successful because of a long-term relationship built on trust . . . Everyone is on first name basis. — Nebraska 

Serve on each other’s boards or other committees

Many state deaf-blind project and parent center pairs have representatives on each other's boards or other committees. These representatives are typically staff members, but may also be other individuals who can bring the specific project’s perspective to the group (e.g., a state deaf-blind project might identify parent leaders of children who are deaf-blind to serve on a parent center’s board).

Example: The Ohio parent center is on the state deaf-blind project’s advisory board and on its Technical Assistance Design and Deployment (TADD) Team. This provides additional opportunities for planning and implementation of activities that meet the needs of parents and families in Ohio.

We have the desire to serve on each other's committees because it increases awareness of both agencies’ programs and activities. This provides better outcomes for families. —Utah

Develop materials together

Some projects work together to co-create materials such as fact sheets and slide presentations. 

Collaborate on family training events

Parent centers and state deaf-blind projects often jointly develop and offer onsite and online trainings. Often these collaborations focus on leadership training, but some projects have collaborated on other topics such as the IEP process. 

Some states also give joint presentations at other venues. For example, in 2012 the New York parent center and state project gave a presentation at an OSEP Leadership Meeting about their work promoting family leadership.

We collaborate on quarterly parent online trainings during the school year based on topics of interest to families (solicited via a survey). The deaf-blind project helps host the sessions, and assists with recruiting speakers. The number one topic requested by parents has been behavioral challenges, a topic in which state deaf-blind projects have expertise. — South Dakota

Example: The Florida and Virgin Islands deaf-blind project and the Florida parent center work together to host several family forum sessions (a Mom’s Group, a Dad’s Group, and a Spanish Family Group) at an annual statewide parent conference.

Work together on data collection

Work together on data collection (e.g., focus groups, needs assessment surveys) to support the development of materials and activities.

Share financial resources

A very small number of states have a formal financial arrangement that involves funding from one project to the other and, occasionally, projects share financial resources in other ways. For example, parent centers or state projects will sometimes pay for families to attend events sponsored by the other agency.

Share and/or connect parent leaders

One very powerful way that parent centers and state deaf-blind projects can enhance their services is to train and connect parent leaders who are associated with each of their projects. This allows them to take advantage of family leaders’ specific skill sets, especially skills that aren’t disability specific and are likely to have value for both projects (e.g., grief counseling, navigating Medicaid, navigating the IEP process). 



In Michigan, the parent center and the state deaf-blind project are working to link the parent center’s Parent Mentors with the deaf-blind project’s Family Leaders in their local communities. 

In Arkansas, a parent of a child who is deaf-blind became employed as a parent educator for the parent center. This has assisted the state deaf-blind project in raising awareness of deaf-blindness and enhancing positive relationships with the parent center.

Through collaboration with their parent center, the North Carolina state deaf-blind project added a family specialist.

Evaluate collaboration outcomes

Evaluating outcomes of collaboration means that the state project-parent center pairs work together to determine the impact of their collaboration. At this point in time, most projects are not doing this. However, many do evaluate the outcomes of specific activities or events they co-sponsor.

Parent/family surveys and interviews are a part of our program evaluation. We conduct such surveys and interviews during and at the conclusion of many of our activities and training opportunities, and also during non-activity-related times (at least once a grant cycle, we gather feedback from families). — Maryland