Laura Oliver of Simsbury has been caring for her sixty-one-year-old brother-in-law, Kevin, since he was diagnosed with an aggressive form of ALS called Bulbar disease and relocated to live with his brother and Laura. She and her husband outfitted their home with a wheelchair ramp and an addition to their house to give Kevin more safe space in which to live.
Having retired from her career in the corporate world, Laura put her freelance work on hold and dedicated herself to caring for Kevin whose debilitating disease has now left him unable to speak. The average lifespan for someone with Kevin’s condition is 2 years after diagnosis; he was diagnosed in March of 2023.
In October of 2023, Laura found out about the Community First Choice program in Connecticut. Operated by the Department of Social Services (DSS) and its third-party administrator, Michigan-based GT Independence, the CFC program aims to keep the elderly and those dealing with debilitating conditions out of expensive nursing homes and with their families by utilizing either personal care attendants (PCAs) or paying a family member as a caretaker, part of the state’s push for self-directed, in-home care.
Laura applied for the program in October of 2023, hoping that the extra income would help them care for Kevin, and keep her earning some kind of income. She was approved by DSS following an in-person interview and told it would likely take two months to process her application.
Eleven months later, however, she is still waiting.
According to Laura, it took 7.5 months and phone calls every week or so, before DSS even sent her file to GTI in May of 2024. After that she made multiple phone calls to GTI, waiting on hold for 20-30 minutes before getting transferred — one time to someone representing Ohio — and finally reaching out to Rep. Melissa Osborne, D-Simsbury, for help before GTI contacted her and began the process of creating a profile for Kevin in July of 2024.
At the time of Inside Investigator’s interview with Laura in the last week of July, she was still waiting for GTI to create that profile and she had not received any kind of help or payment for caregiving through the CFC program.
“There’s a problem here,” Laura said. “My brother-in-law is likely to pass away before I get paid for being his caregiver. We chose to sacrifice my career and benefits so he could stay home and be cared for by loved ones. The average cost of caring for someone with ALS is $200,000, and we’ve already spent over $100,000. While just a drop in the bucket, the caregiver pay would be welcome.”
Laura was initially approved for 23.5 hours per week of being a caregiver at a rate of $18.25 per hour. Assuming the initial 2-month waiting period, Laura is out more than $12,000 in caregiver pay. Furthermore, as Kevin’s condition worsens, the CFC program is supposed to reassess his needs and the hours of care he requires. Of course, none of that has happened.
While missing out on that $12,000 doesn’t leave her family in a dire financial situation, she is worried about Connecticut residents who may be counting on that money to care for a loved one.
“We’re lucky to be in a position where I could stop work and care for him. What about people who aren’t that lucky?” Laura said.
Reached for comment, DSS says there is a backlog and structural issues within the program that they are working to address.
“We acknowledge the program has not met expectations,” a spokesperson for DSS said in an email. “We have made structural changes to the unit, which includes new staff and a greater capacity to serve more clients. In the coming weeks, we will continue to provide information as we address the backlog and improve access to services.
This is not the first time the CFC program has been faulted for lengthy wait times. The Connecticut state auditors in 2022 issued a report that found the average wait time between an individual being referred for services by DSS and the actual start date was 102 days, with the longest wait time over one thousand days.
The issues surrounding wait times and poor customer service were largely pinned on Allied Community Resources, the fiscal intermediary for DSS that issues payments to PCAs and family members for caregiving. Allied lost the contract with Connecticut after years of poor reports and union protests over paychecks either being issued late or not at all to PCAs. DSS contracted with GTI in 2024 with a three-year contract worth $126 million, but it appears some of the administrative issues continue to linger.
“This lengthy delay is absolutely unacceptable,” said Senators Lisa Seminara, R-Avon, ranking member on the Human Services Committee, and Stephen Harding, R-Brookfield, Republican Senate Leader. “Simply put, this program is failing vulnerable Connecticut families. We will be demanding answers and accountability from DSS. DSS must be proactive and responsive in its communications with taxpayers regarding the Community First Choices and all its state-funded programs.”
Between Inside Investigator’s initial interview with Laura and publication date, Laura says GTI had finally completed the profile for Kevin, and she was allowed to finally complete her employee application after GTI corrected some other issues. She is awaiting her background check and driving record check but says she has no idea how long that will take.
“I would have given up a long time ago, and I wonder how many people in Connecticut have given up,” Laura said. “They are, for whatever reason, choosing to be a caregiver, keeping their loved one at home, and then this program is advertised, and nothing happens. That makes me really frustrated and sad for people who would need this program to meet their needs.”
**This article was updated to include comments from Senators Seminara and Harding**
Republish our articles for free, online or in print, under a Creative Commons license.
I know how you feel the same thing happened to me in Fla takeing care of my father one leg amputated and other problems only it was the VA never saw a dime he passed away. It never got okayed was still on someone’s desk
It’s just another of many examples of the States inability to perform a function that it corrupts with incompetence with a lack of oversight and ultimately never holding someone accountable and responsible. They invest millions in a program and the only guarantee is the salary those running the programs receive. Keep up the good work in finding issues like this, examples like this need to be highly publicized and legislators held accountable for their inaction in promoting or supporting waste in failed programs such as this one.
It should not be this lengthy albeit it does take an income & asset lookback of 5 years. Approval on the medical side should have been quick whether done by DSS contractors or by SSA. The timeline on ALS has been shortened for approval by SSA because it is terminal. In addition, under the present administration, access to Medicare for SSD/SSA Qualifiers should also be immediate now (new law) to help for medical payments. The essence though is best expressed this way: when you depend on the govt as a health-type system, you are cattle on the farm. There is no sense of urgency. The goal is to create lines & bureaucracy. That is how the system sustains itself. This is why no one should be for single payor. I have had several ALS clients at DSS & any number of paralyzed persons. It was good old fashioned work ethic that got these cases thru in a fairly good timespan.
My Mother in law has been on these programs about 20 years, as was my mom. My MIL has NEVER been in a nursing home, and I have always been able to get caregivers. The state jumped out of the frying pan into the fire with GTI. They are a NIGHTMARE! I already put on about 80 hours a week with CARE but now another 40 most weeks with GTI, almost constantly, to get people paid. They so NOT have their act together and keep telling MANY stories (LIES). I was already on with them 5 hours earlier to get one issue hopefully resolved (pay to a caregiver, take 4). Now I have been holding an hour and a half! Who knows if I will get ANY resolution! They all SEEM nice, but nothing gets done! Instead of checking with sources on things, they just use excuses and blame the other company, person, or us! There are MANY people having issues getting people on, both clients and employees, and KEEPING them on because it is difficult to impossible to get paid! SOMEONE needs to do SOMETHING about this before we loose all our primary caregivers to illnesses and loved ones to nursing homes because if GTI and the DSS or DDS! This place LOVES to blame everyone else, but poor ALLIED got the false blame from 1199 and Sandata, but 1199 does NOTHING about this place not doing things correctly because this is who THEY wanted! Sandata still has not removed us from their lists and continue having huge issues with computers and “going down.” It seems GTI has followed suit with them, not knowing how to program properly! Where is the states head at, doing this to so many?