Our state representatives control almost every aspect of life for high-needs individuals with I/DD. It is the legislature–not the US Congress, not your LME/MCO, not your provider agency, not the county government, not state agencies–that ultimately decides how much gets invested in services and housing for the I/DD community.

While high-functioning “self-advocates” are getting training on how to approach their state representative, most parents are not. And in many cases parents are the ONLY voice their child will ever have. Parents are too exhausted by their daily struggles to advocate for their child’s future, and they don’t believe speaking up will make any difference. Even if they are interested, they don’t know how to frame their story. Too often they write in a long, rambling email that won’t get read. And they fail to copy the representative’s Legislative Assistant, who is the gate-keeper.

Step One: Look up your representatives’ names and email addresses at the ncleg.gov website. Look under both the House and Senate links. You can search by county if you don’t know their names.

Step Two: Put the representative’s Legislative Assistant email in the “cc” line. Their names and emails are always listed under the representative’s name.

Step Three: Focus. Edit yourself–yes, we all have complex lives. Write 3-5 sentences describing who you are, where you live, and the kernel of your story. Follow that with 3-4 short bullet points stating exactly what you need to fix things. Conclude with a line thanking them for listening and that you’re looking forward to hearing back from them.

Step Four: Review. Make sure it’s no longer than one printed page. Make sure you have been respectful, even if you don’t much like them.

Step Five: “BCC” yourself so you have a record of what you wrote and when.

Step Six: Send.

Realistically, individual legislators rarely have the power to force a change in your services, much less changes in the system, even if they are a member of the party in power. But your letter will generate awareness and add to the growing “chatter” in the halls of the legislature about big problems with the system designed to help I/DD families.

I/DD needs are routinely lumped together with all disability needs and thus get overlooked. People with mental health and substance abuse issues make the headlines but we don’t…so we’re invisible. In some other states, I/DD is pulled out of the giant disability pile and gets its own department, etc. So we have to work harder in North Carolina in order to be seen.

Please try!