How Can Parents and Providers Work Together to Advocate for Children With Disabilities?

You click through pages of Google searches, memorize the hold music of countless offices, stack a pile of handbooks and health pamphlets -- and then what? Your child has a diagnosis of a developmental disability, and you stand with this information unsure of what comes next. Navigating the complex mazes that are the health and education systems is not straightforward.

The phrase "advocacy" gets thrown around a lot and often weighs heavily upon parents' shoulders. The reality is that part of effective advocacy comes from collaboration between various people who are all critical in the child's life, but what exactly does that look like?

At the Children's Evaluation and Rehabilitation Center in Bronx, New York, a group of social workers and speech-language pathologists have been asking this question. We, along with licensed medical social worker Diana Rodriguez and speech language pathologist Alexandra Nussbaum, came together to find a way to support families within this complicated and often inefficient system. In addition to the everyday issues and advocacy concerns voiced, we noticed a therapeutic gap -- clearly demarcated roles of "parent" and "clinician" that did not allow for truly active collaboration. Sadly, we also heard echoes of the isolation felt by our families beneath the stress. So, in 2012 we created the CERC Parent Workshop to bridge these silos and foster a team culture to better support the kids and their families.

The workshop is a full-day event that focuses on subjects brought to our attention by parents and the realities of their everyday lives. These conversations drive the format and content, which are adjusted each year to be relevant to the changing needs of the community. Sessions are led by providers such as speech therapists, social workers, psychologists and developmental pediatricians, and they provide current and practical information to equip parents with the tools needed to navigate, advocate and approach daily challenges related to having a child with a developmental disability. Topics vary from general diagnostic information, to accessing services (like making sense of Individual Education Plans) to family issues (for example, sibling support) to information about therapeutic services/interventions (like behavior modification). Additionally, parents have the opportunity to lead sessions and meet with clinicians of all disciplines to ask individualized questions.

Through the process of creating the CERC Parent Workshop, a more active collaboration has begun to emerge between clinicians and parents at our clinic. From this joint effort, four key themes have emerged as critical approaches to being an effective advocate:

Who Is the Expert?

In search for solutions, parents become so wholly focused on that singular question: Who is the expert? Is it the doctor? Social worker? Therapist? For clinicians, policy makers and other professionals, developmental disabilities is their area of expertise, but parents are experts too. Parents know their child's everyday needs, motivations and anxieties -- they are the experts on their own child. This may seem obvious, but it is a reality that is often minimized. When faced with an issue related to a child's disability, parents seek out a professional because they are the "certified expert," but professional knowledge and experience only go so far. Professionals rely on parents' input to fill in the blanks -- using the nuances only they know about their child to maximize success across all areas of their life. Combining the professionals' and parents' expertise paves the way for a personalized approach in a system that often resorts to a one-size-fits-all model.

[See: 10 Lessons From Empowered Patients.]

Showing Up

Being present allows parents to better educate themselves and others on their child's needs. So what does being present mean? Many parents are already doing this. Going to their child's school gives the parent a sense of the routines, general structure and flow of the day. Once again, parents know their child best, and having a sense of the actual space puts them in a better position to tailor it to be the most supportive environment for their son or daughter. Knowing the environment also helps parents process the information being relayed by the teacher or therapist, which in turn allows for active collaboration and problem solving. This also optimizes the potential for carryover of skills across all settings. By being physically available in those instances, the parent will have immediate access to the professional -- having the opportunity to talk opens up opportunities for change.

[See: 10 Questions Doctors Wish Their Patients Would Ask.]

Asking Questions

Let's take a moment to look at this from the perspective of the professional. For them, parents' questions are both an opportunity to learn more about the child, as well as a window into the parents' understanding and point of view. These active dialogues help form and inform parents' support teams -- clinicians can help get answers, direct them to the appropriate resources and assist in advocating for their child's rights and needs.

But how do parents know what to ask? The answer is simple: Ask anything. Questions start conversations. By talking to others, parents are able to decipher and use the jargon that comes with discussing disabilities. Every year, one of the most popular sessions at the CERC Parent Workshop is Navigating the School System -- with conversation often focused on Individual Education Plan meetings. This session came to be because of the questions parents asked; in turn, the information they received helped them understand the necessary steps (and questions) needed to get their child services at school. Knowing these terms can help open doors and prepares parents to actively participate in meetings, appointments and therapies, without feeling overwhelmed by all the terminologies and catch phrases. Asking questions and getting answers gives muscle to a parent's voice.

[See: How Social Workers Help Your Health.]

It Takes Two ... Four... Or More?

There is power in numbers, or so they say. But why, and what does that look like? At the CERC Parent Workshop, many parents voiced a sense of isolation -- of having a "different" child and feeling "different" within their communities. By connecting with others and sharing similar experiences, that parent's singular narrative becomes a part of a collective voice that empowers and amplifies influence. In doing this, parents are also building both a social and practical network of support where information and knowledge is exchanged. This has been one of the most meaningful outcomes of the workshop -- seeing a group of parents who entered the first workshop as strangers now sit supportively together as a group and as friends. Numbers also affect change. From the point of view of the policy makers, administrators and clinicians, a collective voice brings patterns and issues to the surface. For example, by creating a PTA specifically within the special education program, parents would be in a better position to advocate for the specific needs of their children and bring collective concerns to light.

Collaboration is a catch-all term that is sometimes hard to define, as is advocacy. Defining both is an ongoing challenge that has to be individualized to you, the parent, and your family's needs. The same applies for professionals. However the ideas mentioned above, the very same principles that underpin the CERC Parent Workshop, are a place to start: Recognize expertise, be present, ask questions and create supportive networks.

So as you click through Google search pages and hum along to the familiar hold music of yet another office, remember the basics and that advocacy might begin with you but culminates in an "us."

Noor Al Radi received her MS in Speech and Language Pathology at Teachers College, Columbia and practices at the Rose F. Kennedy Children's Evaluation and Rehabilitation Center at Montefiore Medical Center in the Bronx. In that capacity she evaluates and treats patients, supervises graduate students, lectures to parents and professionals and co-developed an annual parent educational workshop.