“It’s NOT my Job”| Caregivers and Direct Care Staff
It is the little things that make all the difference.
For almost 11 years Aaron, my son with the label of autism, has lived with his buddy Jack with 24 hour support staff paid for by their Individual Options (IO) Medicaid Waivers.
In our dream plan and person centered planning, we imagined a caring staff who would not only help Aaron with his direct care needs, but also with community inclusion. We have had some great success stories. Some staff members have become friends and are like part of our family.
Aaron’s individual direct care people are the most important people in his life. He depends on them for everything. We depend on them for everything.
In “Dear Caregivers” Part 1, and Caregivers | Blame it on the Hose Part 2, I talked about our family’s experience with Caregivers and Direct Care Staff. I gave examples of great caregivers who go the extra mile to provide quality care to my son and others with severe disabilities.
This article is NOT about them.
This is about the “OTHER” caregivers and direct care staff.
You know what I mean by OTHER, right?
VACANT
When we brought Aaron back from vacation after Thanksgiving, we found a notice that said the mail carrier had declared the house “VACANT: no further mail delivery.”
Since the guys have lived in this house for over 10 years and there were substitute staff in the house over the holiday, we wondered what could possibly have happened.
We learned the substitute staff didn’t take the mail out of the mailbox. In addition, all the Black Friday ads, newspapers and flyers were all laying in the driveway. No one picked them up, brought them into the house or threw them in the trash. In fact, several were all wet, soggy and had tire marks on them.
Hummm. Obviously, when the mail carrier came to the house it looked unoccupied. There are a couple foreclosure houses in the neighborhood. So, s/he declared the house “Vacant.”
Over the years, I have been to many town meetings with angry neighbors who didn’t want people with disabilities to move into their neighborhood. Because the house rental agreement is in Aaron’s name, my husband and I make sure the house and yard always looks well cared for.
The only solution I can think of is next time we write up an individual service plan (ISP) for Aaron, we will have to include “Staff will pick up the mail, and newspapers from the driveway.”
TURN ON CHRISTMAS LIGHTS
Aaron loves the Christmas lights and decorations on the tree. The first year he moved into his house, Grandma gave him her tree and we gave him all the special ornaments we had saved since he was a baby. Our family tradition was to give him one new ornament each St. Nick’s day to start the season. He had ornaments from us, from his brother and family members, from his teachers and school mates. Some were bought, some were homemade. Aaron loved to take the ornaments in one hand and flip them with his other hand.
Every year our dear caregiver would put up the tree around Thanksgiving. We really appreciated it. Since Aaron spends the majority of his time sitting on the couch in the living room, we felt he could at least enjoy seeing the Christmas tree with familiar ornaments.
Aaron is at the mercy of the staff
Nine out of the ten times we went to pick Aaron up or drop him off, the Christmas tree was never lit. The cord was on the floor and required bending over to plug it into the wall. We even offered to get a longer extension cord if that was an issue. But, even though the staff knew we were coming, they would just sit on the couch directly across from Aaron, and the tree would not be lit.
Next ISP will need to read, “From Thanksgiving until Christmas Day, staff will turn the lights on the Christmas tree from 6 PM to 9:30 PM. so Aaron can look at the lights.”
NOTE: I was going to give a lot of other examples, but this depresses me too much and I think you get the idea.
Taking RISKS
I’m expecting that sharing these stories will come back to haunt me. The agency will give this as an example of how we don’t appreciate their staff. They will probably say exposing stories like this, which are based on my actual experiences, are exactly why no one wants to work with Aaron. Not only is he a tough kid, but his parents are impossible, ungrateful people who are the problem.
In my personal and professional experience, many agencies SAY they want parents to be involved, but they really don’t. They would rather work with people with autism and developmental disabilities who have no parent involvement, no advocates, no one who would ever question what they are doing.
Parent Involvement
Many agencies say they want parent involvement–but what they want are parents who will just tell them they are saints and wonderful. Many agencies just want parents who will raise money for them and advocate to the state and county for increased rates.
I know people with disabilities who have family members who seldom see them. This is so incredibly sad. I used to think it was all the family members fault. Not anymore. It takes persistence and determination to keep on keeping on.
I cannot begin to tell you how hard it is to work with some of these staff people. Tom (my husband) and I have documented staff members who disobeyed the laws and agency rules. Sometimes, to the agencies credit, they did remove them: some smoked in the house, some left Aaron in hot cars while they went inside a store, some yelled at Aaron, some had cars that weren’t safe, some refused to clean bathrooms until the entire house smelled like urine, some asked us for money, some didn’t speak English, some came from different cultures and only thought of themselves–not Aaron.
If some of this sounds prejudiced. So be it!
Staff people have said to me: “But I don’t brush my teeth twice a day, why would I have to brush Aaron’s twice a day.” “I don’t use shampoo when I wash my hair.” “In my culture, we don’t give baths every day.” “I come from a country where it is always hot. So I need the furnace to be set on 80 degrees”–even though this made Aaron sick. The list goes on forever….
First Hand Experiences
I am pouring out my heart here. I couldn’t make up these stories. I guarantee each of these examples actually happened to us. They are all first hand experiences. I hope that by putting them on paper they will begin a discussion about how people like Aaron, who have severe disabilities, can get a better quality of life. That life depends on excellent caring direct care staff and caregivers. They have an important and difficult job. The good caring staff are more precious than gold. We love them and cherish them. We try and support them every way we can.
The OTHERS… well, they can still be nice people with good intentions. We hope they find a job they can love and do well…but not with Aaron.
Keep Climbing: Onward and Upward
All my best,
Mary
Please Comment:
What would you do if this was your child? What do you think Aaron is feeling when he can’t talk or physically do what he wants to do? What would help? Do schools and adult service agencies really want parent involvement? Are parents just ungrateful?
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Hi Mary – always a pleasure to hear what you’re thinking, even when it makes me wince, as a service provider, friend to folks with disabilities, People First advisor and family member. Yikes. I think it’s very hard to understand until you’ve been a parent in these situations… I was a professional and service provider for 15 years before we started fostering and adopting kids and I had no idea. It seemed to me then that it was always great to add hours and good staff for someone; from the other side of the table, though, whenever we got “more” hours and “more” staff I just thought “oh please god no, not more.”
A couple of things are giving me traction these days – one is making asset inventories with the folks supporting people, so that they have a sense of what’s best and brilliant about them. and then turning those into posters so they’re always hanging right in front of people. I try to do this at big friendly meetings with friends and family there, so people see the kids are valued by others. I recently didn’t do this at a new school where the staff all seemed to coming from such a positive perspective, and it’s just been catching up ever since. The second thing has been focusing not on the systems but on unpaid and (really) professional supports. Our daughter’s hour a week with her therapist, who essentially has taken on helping her manage her week, costs three times as much as an hour of staffing but has allowed us to go from about 20 hours a week of support to zero. She goes in, debriefs from last week, plans for next week, and is getting increasingly independent, which is what she (and we) wanted. Likewise, an hour of OT support talking to my son’s school saved hours and hours of explanations – she thinks he’s wonderful and so do I, but she’s a “real” professional and I’m just a parent (with three degrees, lol!).
But what I really get from this is how important it is for all of us to have involved and loving people in our lives. Because probably no one else is going to pick up those newspapers 🙂 (or notice that they should be picked up).
HI Aaron,
Loved all your comments. I wish you could be my service provider. You understand where I’m coming from.
I just signed up for your blog and it gives me hope that others are also trying to make all the theory real. I believe, I really do… but I’ve interviewed about 10 companies over the last year and am shocked about how little the providers know about the history and best practice of people with disabilities.
It is like trying to get the school districts on board all over again–only this time there is no mandate, no due process, and no funding for training or licensure. It is shocking how few options we have…and no one seems to be accountable unless there is abuse or a death.
I love the idea of creating a poster. Reminds me of the MAPS and PATH strategies. There are so many things we have already figured out, now to just make them happen.
It is ridiculous how selfish people can sometimes be. Just the simple tasks of bringing the mail/newspapers in or plugging in the Christmas tree lights can brighten or make one’s day so much easier. I totally agree with Elyse about these things being noticed by outsiders. These outsiders could be burglars and then something much worse could happen. So sad.
Keep Climbing,
Austin
Thanks Austin for “getting” this. Sometimes I feel like I must be nuts.
When we fought to get group homes in neighborhoods, it was perfectly clear that people with disabiltiies were going to be held to a higher standard than other neighbors. Many people are looking for reasons to devalue Aaron and Jack.
Our leaves must be raked first, our sidewalks cleared, our bushes trimmed, our flowers prettier. So part of the issue with a notice saying the house was “vacant” or having old papers in the driveway also has to do with the neighbors acceptance and sense of community. So far our neighbors have been great. But Tom and I work hard to nurture those relationships.
It absolutely infuriates me that there are people who are “caring” for people when they should be doing something else. Honestly, as sad as it seems I would leave signs and messages up for “staff” who forget to pickup newspapers, use shampoo, and keep Aaron’s home a warm and inviting place. I am going to say a prayer for your wonderful Annie, and also sent a prayer to the one above to send you some tlc staff for Aaron, because I really do believe that you all deserve the very best.
Thanks Danika, we need lots of love this week.
Terrible situation. Being an adequate caregiver is this person’s JOB, they are getting paid to complete these tasks. Especially if these caregivers are from different agencies, you would think they would have been given certain guidelines and educate rules before being eligible for positions. Not only does it make the caregiver look irresponsible but it also gives their employment agency look bad. The company should have some sort of evaluation for the caregivers to ensure they are giving satisfactory care. What is really scary is that uncollected mail and not turning on the Christmas lights can all be easily noticed by outsiders, but what other needs are not being met behind closed doors?
You’re right Elyse, what else is happening behind closed doors?
Unfortunately, there is not a system of checks and balances. There have been so many cutbacks, any supervisors, or county investigators have long ago been eliminated. Until there is physical abuse–no one seems to notice. And abuse is darn hard to prove.
Last weekend, when we took Aaron home, there were 3 wet newspapers in the driveway. If we wouldn’t have picked them up, there would have been 6 next weekend. It never ends.
Thanks for your caring comment. It helps to know others see our side of things.
Sounds horrible. I can see that they might be depressed and offering a lack of care but the situation still stinks. My thoughts go out to you and Aaron.
Thanks for your good wishes Alison. Say a prayer for our dear Annie. She is having some health stuff right now. She has held the house together for over 8 years. We love her, and we need her.
Caregivers are first in line to observe and report changes in the client/patients condition.
I would be very concerned that the caregivers are minimally observant about the environment. But the sad truth most day to day caregivers are underpaid and under-trained.
I think they may find it helpful to have that scheduled guide (they might actually appreciate it) and maybe you’ll have to concoct some non-monetary incentives. Maybe thank you cards sent the aids? Or a pizza fund?
My sister-in-law is a care attendant is a caretaker – I’ll ask her what made a difference in the level of care she & the others would give.
Also, note that many caretakers are burnt out and depressed. One of the most difficult aspects of caring for another person who is disabled is the helpless feeling the caring person has on being able to make a difference. People want to know that what they do makes a difference.
Most disabled people will never “get better” and it can be hard for the care giver to see how or if they are making a difference in this persons life.
Perhaps you can “dig deep” and find some good qualities in the caregivers? Try to reinforce the point that they are VERY important and that you do appreciate their efforts.
This is a monumental challenge but it should pay off.
You have made some excellent points Leigh. We often forget the toll on their spirit when they know no one is going to improve.
I imagine you will be correct concerning “It’s not my job”|Caregivers Part 3 | Climbing Every Mountain. I am not sure if everybody could see the concept in this way needless to say.
Welcome Alphonso,
Usually the only people who understand the issues are people who use the services of caregivers and direct care attendents.
Hi Mary. Great but disturbing topic. The language problem I have seen both in Bruce Garver’s class and the two nursing homes my mother has lived in during her lat six year on this planet. It frustrated mom furiously. This occurred more often on weekends then during the week.
You may remember we live in Southern California with a very high concentration of Hispanics. In spite of my hearing loss I have wondered if i should learn Spanish so as to be able to help mom or when I was volunteering.
Now with the possible begining of a new ice age I may still need to learn Spanish. While soCal wil be much nicer than say Ohio. It might still be too cold for me.
The other thing that hit me while reading this post is that had I been more typical in how rubella harmed me I would be in Aaron’s shoe. Also I can’t help but wonder what I might be in for when I get older as some of the problems I had as a child may come back after being gone most of my adult life.
Well my mind and heart goes out to Aaron and all like him.
Mary,
I think we assume common sense lives in all adults…Well I have come to realize that common sense just isn’t to be expected. So while, using shampoo, and brushing one’s teeth makes complete and total sense to you and I. It apparently doesn’t make sense to some. So posting reminders might help them serve Aaron to your standards. It’s just a suggestion…clearly not the end all of solutions. I share your frustration with the lack of standards and guidelines for the care and support of individuals who need it. Sending you and Aaron all positive thoughts.
Thanks Janna, it’s a long road and we need all the suggestions we can get. Your good heart shines through.
Mary, I know these stories are true because I have seen it first hand. I serve many people who are in the same boat as Aaron. I don’t buy the excuse of “we don’t make enough money”. They knew how much they were being paid when they took the job! And it isn’t Aaron’s fault the pay is low! If I were you, I would make visual reminders…like “Bring in the Mail”, “Turn on Christmas lights” etc. Then hang the signs where the staff people cannot miss them.
Does Aaron have a “Manual of care”? One that he has written? I encourage all of my FC users to develop a “Manual” because staff turnover is high. In this way, all of the things that are important to Aaron and you are documented in this manual. Things can be added or deleted as necessary. Then support people must read it and sign that they understand the conditions. When you add a “new item”, you can have staff sign that they have read the new request then add it to the binder. While the initial effort to put the manual in place is time consuming…in the long run it saves time as new staff come on board! My thoughts are with Aaron….
Janna
HI Janna,
Thanks for your comments. The Manual of Care is a great idea. Many attorneys also recommend parents and guardians include specific instructions in their wills and trusts.
My first attempt was https://climbingeverymountain.com/dream-plan-for-aaron-1989-part-2/
The problem was I would never have thought I would need to be so specific as to say, use shampoo when washing hair…or take a bath every day…or bring in the friggin’ mail.
Guess I’ll need to write a hundred page manual, or something. I keep hoping there will be some basic standards of operation, some government body with oversite to make sure Aaron is protected on a basic level. This is why the schools work better. There are certified teachers with basic training. There are IEPs and parents have the right of due process. IMHO there should be some similar protection for adults with disabilities.