Editor’s note: When the author recently wrote about her son being kicked out of day programs, she mentioned starting her own program for him. We thank Deborah for taking the time to respond to inquiries from the NCSA community seeking further information about how she did it.
By Deborah Lane
My son B has been receiving services from the Connecticut Department of Developmental Services since he was 5 or 6 years old. When he was younger he primarily received his services through the school system and occasional respite dollars from DDS but that was about it.
When he aged out of school at 21 and entered into the day program world that’s when his “budget” kicked in. He was assigned a yearly dollar amount based on his level of need (LON). He had the highest LON score possible because of his behavior. It is this budget that pays for his day program, wherever that may be.
The money follows him and so when he was asked to leave his second day program, and we decided to create our own program, his budget came with him. What we did in our state may not work in every state because each state has their own system and funding.
The official wording for what we are doing is called self-determination and that basically means we are taking matters into our own hands because the hands who are supposed to create appropriate programs have failed. I named our homeschool day program - which only B attends - “Pine and Myrtle” which comes from the Bible; Isaiah 55:13 “instead of the thornbush will grow the pine tree and instead of briers the myrtle will grow.”
The funding that we receive channels through a third-party financial fiduciary agency, and that’s where the nightmare begins. The particular agency we use is incompetent at best and run by people who seemingly were hired because they can breathe. I don’t mean to sound harsh, but that’s just the way it is. Dealing with them is nothing short of awful, stressful, and frustrating as they are very rarely able to answer my questions, or they give me wrong information that I then act on and later it becomes my responsibility to untangle the mess that they cause. I have spoken to the commissioner of DDS, and her only response is that I am not alone and everyone has negative feelings about them. Very helpful, huh?
As far as the logistics of the program, we are on our own in finding staff, and people are not lining up for this line of work so this is a huge challenge. Once we find someone, there’s a lengthy application process that goes through the third-party agency. We have had more than one “interested” candidate go through the entire hiring process only to reject the job at the end. We have been without any staff at all for months which I’m sure you can imagine is beyond stressful. We currently have one support buddy…ONE. So if he calls out, which he does on a regular basis, then we have no one. Not only does he call out regularly, but he also does it at the last possible minute. We will be up and ready for him in the morning and, boom, I get a text signaling a different plan.
I’m sure it comes as no surprise that B needs to know what his daily schedule entails with his autism diagnosis. We sit down for dinner, he says his blessing, gets his dinner music set, and then like clockwork, he will ask what will happen when he gets up in the morning. The best I can answer is “well, hopefully, Brian will show up.”
We hire staff and operate the payroll, which has gone from old-fashioned time sheets to an online portal. The transition to the portal has been particularly challenging for me as I am the least tech-savvy human being on the planet. I am learning to coexist with the portal, but we will never be friends.
We plan B’s day and try to make it productive and fulfilling for him. We belong to a Facebook group called Buy Nothing where people give away stuff. Someone was giving away bags full of cans and bottles for recycling so I jumped on it and got them for a “job” B could accomplish. That grew into a whole community of people who are constantly reaching out to us with their cans and bottles for B to have. It’s been a high spot and a blessing, to say the least. For the first part of his day he and his buddy do pickups from people's houses and then they recycle the cans. They then go to the gym, and B enjoys the fancy massage chairs, and then it’s lunchtime at home and a walk down to the boathouse.
“The day program I’ve created is a lot of work and mostly stressful.”
Sometimes the phone store in town lets him play with the display phones so that’s usually a stop in the afternoon. He also enjoys a trip to Walmart where they let him play on the computers. As you can see, the community and businesses have welcomed him, which really blesses my heart. We affectionately call B the mayor of Glastonbury.
The day program I’ve created is a lot of work and mostly stressful. The primary anxiety stems from wondering if his buddy will show up. For B, he is living his best life, and his behaviors have decreased. I have to honestly say, I thank God for leading us down this path. B is happier, more settled, and looks forward to his Pine and Myrtle days. We’re hopeful that the days ahead will possess more pine and myrtle than thorns and briers.
Deborah Lane is a mom who lives in Glastonbury, Connecticut. B is the youngest of her five children. Everyone else is grown and flown and busy giving her grandbabies. Needless to say, they bring her joy without measure. She hasn’t been able to work for many years now as B’s needs became too intense. She loves movement of any kind and needs it! She calls out the name of Jesus all day and night as her source to get through every moment.
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