During a trip to Bridgeport’s Beardsley Zoo in 2012, Sharon Cable’s son, diagnosed with autism and schizophrenia, wanted to find out whether the zoo’s tiger was ticklish.
An in-depth series looking at how autism impacts us all. So when his dad went to the bathroom and a zookeeper wasn’t looking, 18-year-old Alex Cable hopped a fence, ran up to Victor the tiger’s cage, and reached his hand in while Victor was sleeping.
“When Alex tickled him, he woke up and bit off the tip of his finger,” Sharon Cable said, adding that doctors were able to surgically repair her son’s hand.
Alex Cable, now 26, is taking classes at Tunxis Community College in Farmington and hopes to one day get a full-time job. Due to his autism and schizophrenia, he constantly needs to be watched because he has “no sense of safety,” his mom said.
“He's 26 years old, he's doing college classes, and he cannot cross the street by himself,” Cable said. “It sounds ridiculous, and you say, ‘Why can't you teach him that?’’ We taught him, he can explain how to cross the street, but he doesn't actually do it … If he wakes up in the middle of the night, you better be awake to see what he’s doing.”
Despite his significant needs, Alex Cable is one of hundreds of adults with autism in Connecticut who have been waitlisted to receive support services because there isn’t enough funding available to meet the need. So with no better options, Cable and her husband James, who recently retired from his job to take care of his son, look after their son and try to keep him with a structured schedule of activities, like sensory yoga and volunteer work.
“There's a lot of families like us. We are not alone,” Cable said. “The stories are a little different, and we have that weird tiger story, but there are a lot of families struggling to keep it together.”
Up until a student receives their high school diploma, public schools are required to provide special education services to students diagnosed with Autism Spectrum Disorder and other disabilities under the federal Individuals with Disabilities Education Act (IDEA) of 1975. The legal mandate, however, ends after graduation, and individuals with autism are no longer entitled to support, creating what’s widely referred to by families and activists as “the services cliff.”
“These guys are getting nothing,” Cable, who also works as the coordinator of support services for the Focus Center for Autism in Canton, told a panel of state lawmakers during a forum on autism services in February.
“I laugh when professionals say, ‘Talk to your case manager.’ There is no case manager, nobody's watching over them,” Cable said.
As autism prevalence rates continue to climb nationally and more students with autism age out of the school system every year, autism advocates and families in Connecticut are becoming increasingly concerned that the state’s adult service systems are largely unprepared to meet the growing need. In 2017, the U.S. Department of Health and Human Services estimated 500,000 individuals with autism would transition out of the education system and into adult service systems over the next 10 years.
“The system is going to explode,” said Leslie Macnab, executive director of Wallingford-based nonprofit Autism Services & Resources Connecticut.
“The autism prevalence rate is just going up and up and up, and even if it stays the same (at around 1 in 54 children currently), in 15 to 18 years, those kids are going to be phasing out of the school system … We already have waitlists, so how are they supposed to take on more capacity without political will, without money, and without resources. I just don’t know. It’s exploding, and it’s very scary.”
Adults with autism who meet certain eligibility requirements can receive a wide range of services through the Department of Social Services’ Autism Lifespan Waiver, a Medicaid program that allows the state to “waive” certain federal Medicaid requirements in administering services. Each participant is given a needs assessment and based on that, they are given a maximum amount of money they can spend on a wide-ranging menu of support services that includes: behavioral services, job coaching, a community mentor, a life skills coach, social skills groups, respite case, assistive technology, an interpreter, a specialized driving assessment, personal emergency response system, individual goods and services, and non-medical transportation.
Due to a lack of available funding, the program is currently only able to provide services for 116 individuals, a small fraction of those who have applied. As of June 25, 1,691 individuals were on a waiting list for the program, including 873 individuals under 18 and 818 people over 18, according to numbers provided by DSS.
“I can’t help but look at that number, 1,600, those are real people who are struggling just to get out, to be connected, and 10 years is a huge difference between 21 and 31 with what they’re able to do,” said state Rep. Tammy Exum, D-West Hartford, during the autism forum in February. At the time, the number of people waitlisted was around 1,625 but has since grown.
Despite its “extensive” waitlist, DSS projects it will only be able to take about 30 people off over the next three years due to financial constraints and a lack of care providers.
“It is difficult to estimate the wait time involved for a slot, as it relies on attrition of current people who are served,” department spokesman David Dearborn wrote in an email. “However, it’s clear that the waiting list is extensive and it would take years.” Once someone receives a waiver, they retain it “indefinitely so long as he or she remains functionally and financially eligible,” he added.
For families reaching out for support right now, the waitlist feels hopeless.
“Presumably, if you’re letting in 10 people a year and there are 1,600 people on the waiting list, presumably there are people that will never make it on to get the waiver,” state Rep. Lucy Dathan, D-New Canaan, said to Bill Halsey, the director of integrated care at DSS, during the forum.
The current waitlist doesn’t even truly represent the number of people in need, advocates argue.
“I know so many families who say, ‘Well I’m not even bothering to apply for the waitlist, they’re never going to give me services, and I say, ‘No, you gotta put your name on because we have to be able to accurately count for the need,” Macnab said. “Only having (1,600) people on the waitlist is crazy because we all know there’s a hell of a lot more people that are going to need that service.”
Meeting the need
Taking individuals off the wait and creating more slots will ultimately require lawmakers to allocate more funding for program slots, said state Rep. Cathy Abercrombie, D-Meriden, chairwoman of the legislature’s Human Services Committee.
“Any time that we try to move individuals onto a waiver … what people forget is it’s state dollars. We have to put up the dollars to be able to put more individuals on it,” Abercrombie said during the February forum.
It currently costs DSS an average of $26,061 to provide services to each of the 116 individuals receiving a waiver, according to Dearborn. At that rate, it would cost over $44 million annually to service all 1,691 people on the waitlist as of June 26.
Lawmakers at the February forum expressed concern about the size of the state’s autism waiver waitlist following an overview presentation from Halsey. Abercrombie jumped in during the discussion and reminded colleagues, “we hold the purse strings.” As the state has worked through budget deficits and economical constraints over the past decade, social services has typically been one area officials look to trim first because the costs aren’t fixed unlike other areas of the state budget.
“We’re drilling DSS about the amount of people that are on the waitlist, but we also have a responsibility, right? We have not put the dollars into our human services budget. They have been on the cutting (board) over the last six budgets, right? So we also have a responsibility because DSS cannot take people off the waitlist if we don’t put money in the budget,” said Abercrombie. “DSS gets hit for a lot of things that they do, but this is an area that really isn’t their fault.”
At the forum in February, Abercrombie made the case to colleagues that the legislature should look to allocate more funding for the autism waiver given that “the tide is turning” financially in the state. Those remarks, of course, came one month before the COVID-19 pandemic hit and turned the state’s financial outlook upside down.
A financial forecast recently released by the Federal Reserve Bank of Boston projected the state’s tax revenues for Fiscal Year 2020-21 will drop between 6% and 20% as a result of the pandemic.
“It’s going to be challenging to put more funding into some of these programs ... because we know there’s going to be a huge financial deficit to the state as a whole,” Abercrombie said in a recent interview. “Human services is always the area that gets hit because even though it’s the right thing to (fund) it, you’re not obligated to do it.”
Dearborn, the DSS spokesman, said the department’s plan to take 10 people off the waitlist each year for the next three years hasn’t changed, but he added the plan is subject to “pending budgetary decisions going forward.”
Losing financial eligibility for help
In some cases, families who are waitlisted by DSS are able to apply to receive certain services from a Medicaid initiative launched as part of the Affordable Care Act called, “Community First Choice.” The program allows individuals to receive supports and services in their home, such as help preparing meals and doing household chores, and assistance with activities of daily living.
After her son was on the autism waiver waitlist, Sharon Cable said she discovered Community First Choice and said it was “amazing.”
“They gave us a lot of hours (of service). We trained 10 people to work with him, and it was great,” Cable said.
But when Cable’s husband recently retired to take care of his son, that triggered her son’s social security benefits to increase and made him no longer eligible for Medicaid, meaning he lost all services under Community First Choice.
“The way we found out is we got a call while (Alex Cable) was out with a worker saying his funds had been cut off and don’t spend anymore,” Cable said.
Cable’s situation illustrates how vulnerable and fleeting Medicaid and other services, including help with finding housing, can be for families and individuals with disabilities. Many middle-income families just outside the Medicaid financial requirements are never eligible to receive services from DSS and must carve out services and a path to independence on their own.
“Sometimes it’s a matter of points that separates who qualifies and who doesn’t qualify. And the person just over the cutoff still needs support, and the housing and the services aren’t necessarily available, so they fall into that vulnerable place,” Exum said.
‘Arbitrary’ IQ cutoff
In addition to financial requirements, Sharon Cable said finding services for her son is also made difficult by an unusual “IQ cutoff” enforced by state statute. Connecticut is one of the last states in the country that still uses the medical diagnosis of mental retardation, measured by having an IQ of 69 or lower, to determine whether people with autism are eligible for certain services.
Alex Cable, 26, works on a problem in an Intermediate Algebra class as father James looks on at Tunxis Community College in Farmington, Thurs., Mar. 12, 2020. | Dave Zajac, Record-Journal
Decades ago, the majority of people diagnosed on the spectrum were also considered intellectually disabled, however, the federal Department of Human Services reported to Congress in 2017 that 31.6 percent of children with ASD are intellectually disabled.
Under state law, an individual who scores an IQ of 69 or lower receive services from the Department of Developmental Services (DDS), while those with an IQ of 70 or higher receive services through the Department of Social Services (DSS).
This cutoff puts individuals with an IQ of 70 or above at a disadvantage because DDS generally offers more services and has shorter waitlists, advocates say, though they note even DDS still has wait times for services like day and residential programs and behavioral services.
“There are still hundreds of families that are upset about lack of what they would think would be appropriate services from DDS,” Macnab said.
Advocates, families, and medical professionals for years have lobbied the legislature to do away with the “IQ cut off” because they argue it’s not the best indicator of need and precludes many families from services.
“It is an arbitrary cutoff that does not serve certain people well,” said Dr. Jim Loomis, a child and family psychologist and the director of adult services at the Center for Children with Special Needs in Glastonbury.
“Departments across the country need some kind of a threshold, and this one is set and in some respects arbitrarily. It would be preferable to really look at their capacity and evaluate it in a more qualitative way,” added Loomis, who also sits on the state’s Autism Spectrum Disorder Advisory Council.
But despite the pleas, there hasn’t been enough “political will” to change the cutoff, Macnab said, in part because lawmakers fear that opening up DDS services to those eligible for DSS would only create longer waiting times for those currently served under DDS.
“I always like to err on the side of caution because any time you change a program, somebody gets hurt, right?” Abercrombie said, adding she wants to do more research before deciding whether the state should eliminate the IQ cut off.
“If we take away the IQ as a base, what happens to all these individuals that use the IQ and get their services. Like how do we make sure they’re still getting all their services?” Abercrombie said.
While some say enough funding isn’t in place to meet the need regardless of the IQ standard, Macnab said doing away with it would help because it would put all autism cases under one department. With Connecticut’s autism services separated into two agencies, it’s hard to get a clear picture of the statewide need, including information as basic as how many adults in Connecticut have autism.
“The way autism research is best done is through the school records — we know where they are, we know what services they get,” said David Kearon, director of adult services for Autism Speaks, the country’s largest autism advocacy group. “Once they leave the public school, we don’t really know where they go in many cases. We don’t have a national registry like other countries might have.”
While DDS and DSS can provide numbers of cases, their database may only reflect those who reach out for services.
“These people are getting forgotten after graduation,” Macnab said. “If families have a kid with an IQ of 69 or lower, they at least get into the DDS system and they’re not necessarily lost. But if they have an IQ of 70 or higher, you are looking at a population that’s completely lost.”