In “Dear Caregivers” Part 1, I talked about the critical role and some of the issues of the caregiver or direct care staff. Today in Part 2, I’d like to share a story of what happened last Thanksgiving weekend. Holidays stress everyone–the people with disabilities, the parents, the staff and the system.
Nobody’s Home
We usually take Aaron home to our house for the holidays so we picked up Aaron on Wednesday. Our regular staff person happily began her vacation and we were going to return Aaron on Sunday evening.
We had a nice Thanksgiving with Grandma and the family. All is right with the world, right?
Blame it on the Hose
On the Saturday after Thanksgiving, Cincinnati was due for its first winter freeze. Tom remembered the outside garden hose was still hooked up at Aaron’s house. Since we take care of all the flowers, mulching and gardening at the house, Tom was worried the hose would expand, break, and cause damage to the plumbing inside the house. We treat Aaron’s house the same as we treat our own, so we drove to Aaron’s house to take care of the hose.
Somebody’s Home
When we arrived, we were shocked that all the lights were on in the house. We knocked, but when there was no answer, we used our key and yelled our “hello.” The TV was on, there were newspapers scattered all over the living room, there was an open purse sitting on the chair, but no one was home.
Our first reaction was to check the house for bodies, worrying someone was hurt and therefore couldn’t answer the door.
Next, we wondered if someone broke into the house and ran out the back door when we pulled up.
Several years ago, the residential company brought homeless people into Aaron’s house when they knew Aaron and Jack were away for the weekend, (another post sometime) so we considered that possibility.
We debated calling the police but decided to first call the residential supervisor.
“What is your problem?”
She told us Jack and the sub staff person must have decided to go out (without her purse, I might add).
The supervisor assured us her company would NEVER just bring strangers into a home (she’s only been with the company for a year so legitimately, she might not have heard the homeless story). She told us they always have plenty of staff to cover holidays and basically made it clear we were bothering her when there was NO PROBLEM.
She also told us that even when Aaron and Jack go to their parent’s homes every weekend, there is still staff covering the house—which we knew for a fact wasn’t the truth.
So, what to do?
We fixed the hose. We left the lights, TV and mess. But once again, we cursed the residential company we are forced to live with. Once again they lost our trust.
Anybody Home?
We brought Aaron back with us, hugged him and gave him extra attention all weekend. We seriously considered just keeping him with us, but there are thousands of people on the waiting list for the Medicaid Waiver. So, if we gave up Aaron’s Waiver, it could be years until he got another one and we aren’t going to live forever. So giving up Aaron’s residential “slot” would only be a short-term fix to a long-term problem.
“I didn’t want to hurt your feelings.”
The next week we found out no one wanted to hurt our feelings and tell us no staff person wanted to work with Aaron. Apparently, they could find a sub staff person for Jack, but not Aaron. No one thought we would find out, and they thought they were sparing us emotional pain.
So
It was hard to be angry with anyone. Unlike the supervisor, we had a long history of trust with some of our caregivers. We know they love Aaron and give him extra attention and support. They are the ones who bathe, dress and feed him. They clean up his messes and work with us when we take our vacation. They were genuinely trying to protect us from the feelings of rejection they knew we would feel. But the miscommunication and chaos theory that geared its ugly head, made things worse. After all, Jack and Aaron were okay.
We told them to just tell us the truth next time—even if you know it will hurt our feelings.
There were also other messes that needed to be cleaned up from leaving the house in the hands of subs for the holiday.
Vacant
When the staff person checked the mailbox her first day back, she saw a note from the mailman declaring the house “Vacant—no further mail delivery.”
Stay tuned for Part 3 of our continuing soap opera… Caregivers| “It’s NOT my job.”
Share your thoughts:
What would you have done if you were the staff person? What would you have done if you were the parents? What would you have done if you were the supervisor? What is the role of TRUST in a relationship? How did it make a difference? How do you think you would feel if no one wanted to work with your child?
Keep Climbing: Onward and Upward
All my best,
Mary
Just found your blog. Can’t wait to read more.
Welcome to our community Crystal. Sit back, be comfortable and share your thoughts when you feel the inclination.
You are quite right about the nonverbal people being harder to figure for most people. I think you have to have some sense of intuition. I also think you have to listen with your eyes, hands and heart.
Most people are overpracticed in using words alone so they have forgotten how they did as a small nonverbal toddler.
I’m thinking that maybe if people who want to help those with severe communications problems tried and imagined or even better role played trying to get people to understand what you want without using words or formal sign language that might help them to learn how to listen with their hearts and eyes.
One other quality is the willingness to sit with and just observe them and be curious about themand their world.
Well that’s just another of my crazy ideas. It would never fly in the real world of course but i still can dream.
Gary, I have worked with a few people who are non-verbal, and I really do agree with you that there is some kind of intuition one needs as a caregiver to work with people who do not express themselves verbally. I am always watching and wondering “What are you thinking about…I wish you could tell me about your world”. Sometimes I have known when people were happy or sad because of the kind of music they would pick, or the look in their eyes. Sometimes silence is a beautiful thing, other times you know that the silence is not a good thing and that any kind of noise would be beautiful. I have so much curiousity myself about those who are non-verbal. There is so much to learn…
Hi Danika. I have experienced everything except picking out music. In the classes i volunteered in it is not so easy to do that. But the main class we had all nonverbal students. I was amazed at how varied the ways they each had of expression themselves and just doing things.
Have you ever felt something through your hands? that can be just as informative. Like the tension in muscles or the way they hold your hand can say a lot. I think that most autistic/nonverbal people have a whole lot more going on tn their hearts and brains than most people would be prepared to believe.
Thanks for sharing your experiences with me. It is nice to know I’m not totally out in la la land.
I like James is idea. I second hearing what Aaron has to say.
I no the monetary pay sucks and the bureaucrats would rather spend money on themselves and wars but has anybody thought about say some sort of bartering system for various providers or something like that.
I wonder as well just how does Aaron feel about the people around. I remember how the jealous women aides said that Maria was completely different around than she was when I wasn’t there. So maybe James has a very good point.
I don’t get the law on everyone in the same house has to have the same providers. I guess that is part of the one size fits all thinking that still is very much alive in our society. Even though this has been proven wrong time and time again.
Janna is going to try and get Aaron to start communicating, so that is fantastic news. I’ll let you know how it goes.
I think it’s time to call a meeting…..the “total honesty” meeting. I would want to know “Why no one wants to work with Aaron”. I would insist that these “reasons” be very specific.
1) Can the issues be corrected by supporting Aaron in developing skills?
2) Prioritize them in order of importance.
3) Develop a plan: I think Aaron’s voice must be heard with regards to these issues and how they can be resolved. Since communication is foundational to any and all life issues…my guess is that Aaron’s voice needs to be better supported and heard and then of course followed.
4) Is the Agency willing and then able to follow through with proper supports? If not, why not?
5) Is it time to search for another Supported Living Agency? What does Aaron think?
6) Who is going to be responsible for the plans implementation and follow through?
7) The most important question I have….Is Aaron happy with his support staff? Happiness and satisfaction goes both ways….you may find out that Aaron is completely dissatisfied with the way this agency is supporting him! After all, he is the true employer. The support staff are working for him. They wouldn’t have a job were it not for Aaron. Maybe it’s time to get rid of the whole lot and hire people that Aaron interviews and chooses. Aaron shouldn’t be subjected to people “who don’t want to be with him”. That is NO WAY to live and feel good about one’s self. I vote for hearing from Aaron!
Wow Janna. I love the power of your ideas. “I vote for hearing from Aaron” gives me chills.
There is no doubt in my mind that Aaron’s regression in his skills is related to his lack of communication. There are so many layers of frustration in what to do, how to fix this. I’ve been trying for 10 years (actually 36).
Being part of the hiring process is on Aaron’s ISP–but no one follows it. The residential company blames the pitiful pay of $8.50 as the reason they can’t hire good staff, but though that is big part of the problem, the internal issues at the company also contribute. To the residential provider’s credit, they actually hired me as a consultant for 3 months to try and find better staff, I started a couple initiatives, but for lots of reasons the end result was I couldn’t make much of a difference either.
There are several reasons we can’t leave the residential company. 1. Annie works for that company and we would lose her. 2. Annie would lose her seniority… if she switched companies (believe me we have begged her to switch). 3. The other companies are not that great either. 4. According to county policy, all the people in the same house have to use the same residential provider. 5. Aaron and Jack are great friends, roommates and have been together for over 10 years–I don’t want to lose that. 6. There is no one who oversees the “quality” of the services–there is a check/balance for the financials, but with all the state cutbacks, reviewers were considered unnecessary surplus.
We are preparing for a new ISP meeting right now. I’m asking for a behavior specialist and a communications S/LP to do evaluations. Since we lost Aaron’s FC faciliator 5 years ago, Aaron lost his voice. He won’t use the communication board with me. I guess I just need to get it out and try again.
Thanks so much for speaking up Janna. It does give me hope that there are caring people like yourself who are helping vulnerable people find their voices. Thanks for rooting for Aaron. We have some good people here too. We have to do SOMETHING to make Aaron’s life better. It is just so exhausting.
Amazing. I don’t understand why no one wanted to work with Aaron. Maybe someone needs to find out what it is that these people didn’t like or what the deal is. As for the other questions I’m clueless.
But the notion that a beloved son or daughter would be completely unwanted that bothers me. I might not have any children or a spouse at this point in my life but my heart goes out to you and to Aaron. One should never feel that they or their loved ones are completely without someone who will work and play with them.
Thanks Gary. Aaron is a great guy. He deserves better.
Aaron is a sweet guy. But he sometimes has toileting accidents. It takes time to get to know Aaron. He can usually tell you want he wants and doesn’t want, but it isn’t with words and takes a dedicated person to want to listen to him. We will find the right people, it just takes time.