CT’s Autism Waiver program has waitlist of more than 10 years; advocates ask lawmakers for help

(WFSB) - A Suffield family is asking the state to invest more money in a program that is supposed to provide services for those with autism.

As the I-Team found, the waitlist is thousands of people long, but only a small number are receiving help.

BRENDAN’S STORY:

33-year-old Brendan Kearney isn’t just into movies and video games, his dad John Kearney says he’s also really good at computers.

”Whenever we have a problem with our PCs here in the house, it’s always Brendan! 99 times out of 100 he solves the problem,” says Kearney.

Brendan has autism, and lives with his parents.

Despite challenges, Kearney has held several jobs through the years.

Still life hasn’t always been kind.

”It’s not been easy for him. That’s for sure,” says Kearney.

MEDICAID AUTISM LIFESPAN WAIVER PROGRAM WAITLIST:

To help make the future easier for Brendan, Kearney signed him up for Connecticut’s Medicaid Autism Lifespan Waiver Program in February.

The program provides support and services to adults with autism who have an IQ over 70, up to $50,000 a person depending on their needs.  

Brendan got in but was immediately put on a waitlist. 

“I was told there was a waitlist, and the waitlist was on the order of more than 10 years,” says Kearney.

According to data the I-Team requested from the Department of Social Services, there are 2,005 individuals on the waitlist.

Right now, there are just 219 people receiving services under the program: 11%.

They’re working on accepting clients with application dates from 2013 to 2014, meaning they’ve been on the waiting list for 10 years.

DSS says each year, at least 10 new individuals are added from the waitlist, but it can sometimes be more.

WHAT DO LAWMAKERS SAY?:  

“It’s an astronomically high number for people that have real special needs and a real use for government services,” says State Senator John Kissel. “Unfortunately, we’re being outpaced by even neighboring states like MA so we can do a lot better here in CT. The waiting list is not unusual here in the state of CT. Unfortunately for us and for those that are on that list.”

Senator John Kissel and State Representative Tami Zawistowski are Kearney’s local state representatives.

After Kearney reached out, they found that most individuals receiving services under the waiver use significantly less than the $50,000 allowed.

The average is $18,000.

The funds are used for things like job coaching, behavioral support groups, or non-emergency medical transport.

”If we could adjust the program caps, we could actually be able to accommodate more people,” says State Representative Tami Zawistowski. “This would solve a lot of the waitlist program without any additional funding.

”Both lawmakers support a bill currently in the legislature that would expand the program to allow 600 or more people on the waitlist to start receiving services by January 2024. It’s called House Bill 5001.

The bill would also reduce the waitlist for a similar program helping those with intellectual disabilities.

There are 948 people currently on that program’s waitlist.

Those with autism are considered to have developmental disabilities, a different category in the state.

“I think the answer is that it’s the right thing to do,” says Kearney. 

SOLVING JOB GAPS:

The bill would also give financial incentives to companies who hire those with disabilities.

”This is a group where they really want these services to get better integrated with regular society and actually job training so that they can go out and be productive members of society,” says Kearney.  

Kearney says it’s a no brainer.

”Again, it’s an investment. This will go a long way toward helping these people with their self-esteem and their dignity and can be part of the solution in terms of filling these job gaps that exist presently,” says Kearney. 

For Brendan, that would be computers.

“He has some programming skills. He can certainly be of assistance on an IT help desk,” says Kearney. “The fact of the matter is, we’re all mortal. And before I go off into the wild blue yonder, as I call it, I’d certainly like to know there is a structure there for Brendan and others like Brendan.”

STILL MORE WORK TO DO:

Kearney says he’s not entirely happy with the current bill.

He and other advocates say the entire waitlist should be cleared using money from the state’s budget surplus, since half of the program is paid for by federal dollars.

To clear the waitlist, Kearney says DSS told him it would cost $17.2 million dollars in state money and $17.2 million dollars in federal money.

“CT has a budget of approximately 21, 22 billion dollars, a multibillion-dollar state surplus, 17.7 million dollars is less than 1/10th of 1 percent of the state budget,” says Kearney. “It is a very affordable number. And again, it’s not a cost, it’s an investment.”

“Even when there’s a surplus as we’re experiencing right now in the state of CT, everyone thinks there’s tons of money to go around but we have to compete with other programs, other services for the people in the state of CT,” says Senator Kissel.

“This is a population that really needs help. But they’re also self-helping. I think this could be a very good priority, I think it would pay off in the long run,” says Representative Zawistowski. “Even though the state is showing a surplus, I mention there’s a lot of competing interests.”

32:58:22 I personally would be very happy to do this but there are a lot of other competing interests. It’s not like you can just pluck 17 million dollars out of something. And you have to look at the ongoing costs as well.

Senator Kissel and Representative Zawistowski say that’s not as easy as it sounds.

A public hearing will be held Thursday in the legislature.

In a statement, DSS Commissioner Andrea Barton Reeves said:

“Clearly, there is an enormous need in our state for autism support services. Under the leadership of Governor Lamont and legislative leaders, we are actively engaged with our partners across state government and in the community to create more capacity to serve more people and provide quality care and services to the greatest number of individuals with ASD possible.”

MORE INFORMATION:

Autism services are provided under two distinct programs within the Medicaid program: the Waiver Program and the State Plan.

The cost cap for the waiver is $50,000 per member and a plan of care is developed based upon the individual’s needs. Under age 22 can have a lower cost as they receive some supports from school and may have supports from Beacon (the State’s behavioral health ASO) as opposed to waiver supports.  If the child has higher behavioral needs or an unstable home environment the cost can be more. The 18-65 year old age group can have higher costs as they are out doing more like working, dating, and other activities in their community. The over 65 age group may have higher costs as their need level rises but may be offset by state plan services such as home health.

From the State Plan:

• In 2015 DSS implemented ASD home-based services for youth under 21 with ASD.
• Carelon (formerly Beacon Health Options), our behavioral health administrative services organization, provides utilization management services for the ASD program under the state plan.
• As of January 2023, over 5,500 youths have received services.
• We have over 800 ASD providers throughout the state.
• Under ASD-specific state plan services, individuals receive a comprehensive evaluation, behavior assessment, home-based services, and direct observation and direction.
• Services are limited to services in the state plan. Also, the ASD services under the state plan are an entitlement and are limited to people aged 21 and under. Individuals on the ASD-state plan are not able to access waiver services. There is no cost cap on benefits.

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