Connecticut residents with disabilities have historically faced long waiting lists for programs that offer help. Support in the General Assembly grew this session, but will it still be there next January?

WSHU’s Ebong Udoma spoke with CT Mirror’s Keith Phaneuf to discuss his article, “The disabled have had long waits for services. That could change,” as part of the collaborative podcast Long Story Short.

You can read his story here.

Episode Transcript

WSHU: Keith, you say in your article that the disabled have had long waits for service, and that could be changing now. But why have we historically had long waits for service for the disabled in Connecticut?

KP: Wow, how much time do you have? This has sort of become almost a cultural thing with the General Assembly. And I’ll just point to one waiting list, perhaps the best known, and that is the waiting list for residential services for the developmentally disabled clients of the state. It usually involves older folks who’ve been cared for their entire lives by their parents who are now senior citizens. And to be quite candid, you know, in their final years, they’re trying to make sure that someone is there to take care of their children. Many, many decades ago, that developmentally disabled person would have gone into a state institution, but we’ve moved away from that. And we’ve gone into a group home situation.

But the bottom line is, decades ago, we started to learn that, wow, we don’t either have enough facilities, enough staff for them, enough resources budgeted for it and the waiting list developed. And the waiting list traditionally in a best case scenario has stagnated and a worst case scenario has grown. And I’ll just finish off my point on the waiting list for residential services. It’s about the same, between 900 and 1,000. That was a decade ago, and over the last decade, we’ve had some very lean years with some big state tax hikes. And we’ve had some very flush years with some record setting surpluses. But that waiting list is just sort of accepted as the status quo.

WSHU: And you give the example of John Kearney and his son, Brendan. He tried to calculate how long it would take for his son to get some of these services. And what did he end up with?

KP: Sure, John Kearney and his son Brendan live in Southfield, his son is in his mid 30s. He was diagnosed when he was much younger with autism. And they wanted to get him into a program the state Department of Social Services runs for persons with autism. There’s a whole wide range of support services that you can apply for. Even though it receives some federal funding it is an entitlement program, meaning money is not guaranteed for everyone who’s eligible.

When the Kearney’s found out Brendon was accepted, they were very excited. Their son had graduated high school, taken some community college courses and is very proficient in computer science, but simply has some challenges when it comes to communication and taking courses. They wanted to arrange some tutors for him, some people to help him organize his classes. And they felt like that would be great for him. Well, they got accepted into the program last year. And then were simply told there was a waiting list. And that was it.

Then as they did a little more research, they learned that there was a backlog of roughly about 2,000 people, they saw the pace at which they were adding them and they figured out that it would take more than 100 years for their son to actually get services. That was hard for them to understand because the estimate to get rid of the waiting list varies. Some estimates have been as low as $7 or $8 million a year. Some folks have said no, it might take a couple tens of millions of dollars more because the state would have to hire more personnel or put more money into contracting with nonprofits.

But just to give some folks some perspective, because we’re throwing around numbers, we have a $25 billion state budget, one or two percent of which is probably in the general fund. We’re talking about a fraction of 1% of the general fund and we’re running up surpluses. Last year our surplus was equal to 18% of the general fund. So folks couldn’t really understand why we have these waiting lists. And again, one of the arguments is that as a state, we’ve become used to them.

WSHU: But we did have some action in this past legislative session that just ended and some money was put towards trying to reduce that backlog. How much has been put in and how fast will it reduce this backlog?

KP: Sure, there are a couple of sources in the budget itself. Over the next two fiscal years the state will appropriate approximately $30 million for a host of human service initiatives with a mandate that the Department of Social Services, which runs the Autism Assistance Program, remove at least 600 people from that 2,000 person waiting list over the next budget cycle. There’s also about $16 million in financing included in the next two-year state bond package that would establish a grant program for supportive housing funds.

Supportive housing is key to start to try to drive down the waiting list for residential services for folks with intellectual and developmental disabilities. That initiative did not come with a specific target. The legislation does not say, we must have that particular waiting list reduced by X number over the next two fiscal years. Although it did begin a new requirement that the commissioner of the Department of Developmental Services report to key legislative committees annually, I believe that will be toward the tail end of this calendar year. In other words, the idea is to try to keep it in the spotlight, keep it in the focus, and at least while we’re running these large surpluses make an effort to start to drive things down.

Because nobody, and I’m sorry to keep harping on this point, nobody really had a good explanation as to why with all the surpluses we were running up between 2018 and the present, why change only began now. And again, I would go back to the point I made originally, which is sort of it became the culture people just became used to the idea that, well, we could do more, but this is all we’re going to do. And there are people waiting. Well, it’s a shame, but we can live with it as a state, has sort of been the unspoken mentality for a while.

WSHU: And is that because they didn’t have a powerful enough lobby to get lawmakers to focus on this?

KP: That’s a really good question. And I’m sorry, if it seems like I’m ducking your question, but I don’t fully know the answer because I think the parents, the relatives and friends of the disabled are a very vocal lobby, very passionate and have always been armed with a lot of information.

I can’t say for sure exactly why things have changed. Other than that, I do think representative Lucy Dathan, who’s a Democrat from New Canaan, and Jay Case is a Republican from Litchfield County, really had an interesting strategy this year. And so maybe the advocates just worked with the right legislators at the right time while we’re still flush with surpluses. But they got a host of legislative committees involved. Because when you confront enough people with the facts, it’s kind of hard to argue against doing more than we’ve done as a state. They got so many folks mobilized.

This assistance you talked about was passed unanimously, in both the House and Senate, when there were a lot of, as you know full well, a lot of competing priorities this year. Despite the flush state coffers, we have a spending cap, and there were folks fighting for more money for higher education, K-12 education, expanded access to health care, affordable housing, municipal aid, other social services, there were a lot of folks fighting for money, but I think they had a great strategy.

WSHU: So basically, what’s happening is something is being done finally, and hopefully with the review later on this year, this issue will be kept in the spotlight going forward.

KP: That is what the advocates insist is the plan. If you talk to representatives Dathan and Case they’ll tell you, this is not a one year initiative, this is supposed to be a foot in the door, and then we keep at it. And we keep at it because the fear is also you know, traditionally if the economy shrinks, usually some of the new programs are the first things that get cut, and everybody is swearing that they did not overreach.

They didn’t solve the entire waiting list all at once. They’re saying the incremental gains we made won’t be pulled back. They’re sustainable, even if the economy slips. So yeah, I think the challenge is that they want to try to keep it in the face of the legislature for several years in a row to see if that’ll produce some sustained progress.

Long Story Short takes you behind the scenes at the home of public policy journalism in Connecticut. Each week WSHU’s Ebong Udoma joins us to rundown the Sunday Feature with our reporters. We also present specials on CT Mirror’s big investigative pieces.