Family-Directed Assessments

The new Part C regulations have been revised to place additional importance on the voluntary family-directed assessment. For some this is new information, for others it is simply a confirmation of the how to perform initial and ongoing assessments. To create an IFSP that truly serves a child and their family, it is important that families decide if they want to participate in a family-directed assessment, who is involved (parents, grandparents, siblings, caregivers, even a neighbor), and how much to share (everything, something, nothing--though this won't really lead to an effective IFSP). The regulations require that qualified personnel use an assessment tool and an interview when performing a voluntary family-assessment.

Preparation

But how can families prepare? Families report that the initial assessment can be a whilrwind of new information and terms. One way is to provide families with a form that they can fill out before meeting with the assessment team.That form can help families to organize their thoughts, and begin the process of thinking about their concerns, priorities and resources. 

Training

Providing training to families on outcomes, what they are, and how families enrolled in early intervention can develop both child-focused and family-focused outcomes can be beneficial. Families and professionals also need to learn the difference between Part C outcomes and Part B goals. It can also be helpful to inform families and professionals about how goals in Part B can be developed that are student-focused or teacher-focused.

Telling Your Story

If we are to effect policy change, those of us who are impacted by policies must be ready, willing and able to tell our story.

Assisting families to think about their story, to identify which part of their story is relevant, and how to tell it in a way that gets their point across, is an important part of helping families to become leaders. If you watch any political debate you can easily see that politicians know the importance of staying on message. No matter what question is thrown at them they give the answer they prepared in debate prep. Family advocates need to learn this same skill. They need to identify their message, hone it and often be prepared to deliver it with minimal prep time.

How does one do this?
The first thing to do is to identify your most important point. For example, I was recently asked to talk about the Affordable Care Act. I support the Affordable Care Act, though I'm still waiting for the benefits to kick in for my family and for insurance to become "affordable". When I was contacted I was told the general scope of the article and had to take some time to prepare my thoughts.

But what to say? Our insurance isn't affordable yet, our son is under 18 so we can't take advantage of the fact that he can stay on our insurance until 26, we haven't hit our lifetime caps and we're the very people who need others to be mandated to buy insurance so that coverage becomes affordable for us. I had to think about how to say all of that in a way that still supported the ACA. I framed my comments by first talking about how rare our child's condition is, how expensive it has been, and how we've used credit cards to cover needed surgeries. Then I talked about how the ACA would relieve our financial and emotional stress because our son's future is brighter now with its passage. You can read the actual article here and decide if I told my family's story in a way that was relevant and got my point across.