Child Family Survey – letter to DDC




Dear Developmental Disabilities Council,

Thank you for publishing the National Core Indicators Child and Family Survey which included the DDC Review Panel Recommendations. (Chld Family Survey)

I notice that many of the recommendations state information should be shared with other organizations who may find the information useful.  This also includes collaboration with parent support and advocacy groups to ensure families are connected to support in their local communities.

This collaboration is especially important when families are in or close to a crisis.  These supports need to be in place and available when families need them.

The Panel recommends that organizations (DDC, DDD and other advocacy organizations) find avenues to fill gaps for families who are not receiving information regarding services/supports which may be available.  It is also recommended that the Division (DDD) provide more choices in service and support to allow families to make real choices.

In addition to the above recommendations, I find one which reinforces my belief that the DDC should provide families support and strategies on connecting with their community.

Given these highlighted recommendations, I believe that the Developmental Disabilities Council needs to be more cognizant of the advocacy groups in our state and treat each group with equal access to not only receive information but to distribute information.  This is true choice and will enable the families to choose the information which best fits their circumstance.

Without this freedom of choice, families are restricted to information which promotes only one view and does not support a continuum of care and services for our community members.  This view and restriction is discriminatory – not only to our community members with developmental disabilities but also their families and the community at large.

It’s fine to look at models – but we must remember they are only models – they may not be the right fit for everyone.  The Developmental Disabilities Council needs to recognize this and allow not only the most prominent advocacy groups to disseminate information but give equal space to the grassroots organizations – many of which are much more in tune with the reality of life for these families.

These groups have much to offer – it’s time for the DDC to acknowledge their existence, research and recommendations.

Thank you,

Cheryl Felak, RN, BSN

Disability Advocate – Parent

Because We Care – Beyond Inclusion