Four times now in the last few weeks, self-advocates with developmental disabilities (DD) have gone to Raleigh to speak before legislative committees about the 1915 (b)(c) Medicaid waiver, which will directly affect our benefits.Â
We traveled separately from all over the state, at great expense for some, feeling the need to be there to explain to the legislators how difficult we believe some of the changes suggested in the waiver will make our lives. In a packed room with 100-plus people last week, three people representing the DD community were allowed to speak to the 12 members of the House of Representatives.
Then last week, with only two day’s notice, over 40 people representing the DD community attended the N.C. Senate Health Committee meeting at noon on June 8. We went to be heard; yet, at the end of the meeting, only one person, the parent of an adult child with DD, was allowed to speak. Her time limit was two minutes – and while she did speak for about nine minutes, when she was finished the chairman announced that there was no more time for public comment until the next morning at 8:30. I was frustrated and angry because my name was on the speaker list but I was given no time. Rep. Verla Insko graciously gave me her time and, after learning our side of it, agreed that the process needs to be slowed.
So that you can appreciate what it’s like for me to go to Raleigh, I left my home in Carrboro at 8:30 a.m. in my wheelchair and returned at 7 p.m., having taken six buses to complete the round-trip. Public transportation cannot get me to Raleigh earlier than 10 a.m., so I was not there the next day, nor was anyone else representing the self-advocates. Rep. Insko, who is a sponsor of the bill, spoke on behalf of the self-advocates based on my points she had taken the time to hear.
Statewide, more than 5,000 people on the CAP MRDD waiver who live in every county will be affected by this change. State legislators need to follow through on their promise to include the stakeholders in the decision-making.Â
Instead, it was passed on Thursday, and moved to the governor’s desk.Â
This is how our new state leadership treats people who try harder than most to be the functioning contributing members of our communities that some of us are – but we have been given little chance to be heard.Â
Is it any better for anyone else in North Carolina right now not connected with a special interest group (i.e., MONEY)? What’s happening to everyone in this state? Wake up!
Ellen Perry
Carrboro
Association of Persons with Supported Employment board member