Sibling to Sibling: Working with Direct Supports Professionals

NOTE: Thanks to “Missy” who posted a question about working with direct supports professionals — balancing between trying not to upset the boat (upsetting the DSP staff) and standing up for the rights of your sibling. First, as my brothers Direct Support Staff will tell you, I do not have this figured out. But, I will share with you what I learned, what seems to work, and what still frustrates me. We welcome and encourage other people to comment.

Background: In our case, David is not personally responsible for hiring his own direct support staff. We work with a provider. The provider hires the staff, assigns the staff, there can be good matches and bad matches. And, of course, there is staff turnover. When you’re talking 24×7 supervision, that’s a lot of people. David and I made out holiday cards for 12 different individuals just for his residential care. There are individuals who come and fill in shifts. Temps. And then there are day program staff. I do not know who is with my brother at any given moment. I mean I don’t know which person is with my brother and often if I did know who, I wouldn’t know who they are. That is the frightening reality.

Speaking of the frightening reality, here are my top 3 daily fears:

  1. Fear of overloading “the system”. Too many complaints, you become just 1 big complaint and then you are completely ignored or humored.
  2. Fear of letting things slide. Wrong-doings swept under the carpet, then you haven’t done your job as an advocate. A little bit sliding all the time can snowball into an avalanche.
  3. Fear of retaliation. The worst fear is a concern that if you really piss off a direct support staff your sibling may suffer at their hands — either through neglect or worse, through specific actions. My brother is vulnerable, dependent on 24 hour support, and cannot call out or run away. For those of you with a family member who has more severe disabilities, more medically engaged…you know that an act of omission can have dire consequences.

Fear and Trust

I want to be aspirational. I work hard to live in continued hope of a fabulous future for my brother. The problems, however are in the “now.” And the consequences are tomorrow… when I have gone and David is alone.

Fear is the dark side of the lack of trust. Last year, I did some best practise research in a different state. I went to a provider who was really working community living. I wanted to see how another state and agency managed this best practise. I spent the day with all of the staff and shadowed them on their jobs. Finally at the end of the day we had a roundtable discussion. I asked: “As a family member, how can a person like me (in my role) work most effectively with people like you (in your role)?” Every single person sitting around the table said “you have got to let go of some of the control, the details, and trust in us.”

In Loving Memory of Walter

I reflected on this during the long drive home and repeatedly afterwards. They have a point. I don’t trust. Why not? The risk is too high. My brother, Walter, choked to death eating a peanut butter sandwich (he had known trouble swallowing — no gag reflex — and “shoveling” and was left alone in the kitchen with peanut butter sandwiches left laying out). I confess that I will not be able to suppress this fear. And this fear is exacerbated by the frequent anonymity of the staff on any given day. I try to find ways to manage the fear factor. Daily. I absolutely must concentrate on the positive.

What Seems to Work

The hardest thing is coming to terms with “least bad” reasoning. Let’s face it, if you have a loved one in any type of care facility or care program you are often faced with making “less bad” decisions instead of great decisions. I long for the time  when our reasoning and decision making is aspirational versus less injurious. This is my hope for the generation coming of age in the next 10 years.

  • When I can’t hope to learn all the staff, I have gotten to know the management and supervisors in charge of the day program and the residential program. I have their phone numbers on speed dial in my cell phone. I talk to them throughout the course of the year. Not just during planning meetings. I call meetings so that the IDT meeting is not the only chance to talk.
  • I work hard to provide materials to let people get to know David. Last year I put together this little pamphlet for David’s staff so they could quickly get to know him (David Fialkowski, All About Me). It was good for temp staff. It worked for a couple months. So that’s something else I learned. What works is stuff that is standard, repeatable, constant. That’s what the “system” is set up for. My “try this try that” — doesn’t work. I used to be disappointed. Now I’ve learned that I need to do things that can be reproduced, not just for David but for other individuals who are served by the same provider.
  • I constantly pick and choose my battles. This is relatively new. My mouth was on auto-pilot: see something, say something. I had to learn (still learning!) to automatically filter and prioritize. I prioritize based on a) most important first (health and safety) b) treating David like an individual with self determination c) things that can help the other individuals as well as David. This filtering leaves me unhappy. There are battles I swallow like the fact that the day program building management asked them to ride up in the service elevator. Or that the office doesn’t have a wheelchair button to automatically open the door (why does it need one, there’s always staff with them?)
  • What could I do better? I could make more of an effort to get to know the people around David. But, what would be even better is if there was a circle around David so that it wasn’t just me. More people calling his house and asking “who am I speaking to? how are you today? how long have you been working with David? do you have children? how long have you been working in the field,” etc. I just don’t have enough hours in the day. I just about manage asking about David. As I mentioned in a previous post, everyone needs a circle. Share the load, rotate the calls. I hope you have one! I mean, wouldn’t that be a great idea: to set up a calling circle? Rotationally call on each other’s families? Use a contact database like sales people do… maybe even call people who are in “crisis” and check up on them and their care … but I digress….

Treasure Those Who Work

There are plenty of support staff who do a great job. And when you find one, they are a gem. My brother has had some staff stability in the last few years (since he moved to his new house). For the moment, we have staff who’s concerned about David in a long term basis. We form attachments as a family. We can invite these people to accompany David to family weddings, professional events, etc. And once there is some staff stability we can start talking about things like self determination, using the iPad for communications, going places specific to David’s likes, hopes, dreams.

What’s YOUR Situation?

What have you found? What works? How do you keep an open dialog? Do you know your DSPs? Please share, we can all learn from each other…

Yours in Community,

10 responses

  1. I have much I could add here, and so could many sibs I know. For now I’ll just say that I appreciate the tip about getting to know management. I’ve always focused on my sister’s DSPs, and have found most of them to be sensible and responsible. But for reasons I’ll skip here, I can definitely see the wisdom in your tip.

    1. Hi Rachel, One reason I connect with Management is simply that they last longer 🙂 Good to hear from you and thank you for posting a comment. Kate

  2. […] Read the rest here… This entry was posted in General. Bookmark the permalink. […]

  3. Thanks Kate! well said!!

  4. Kate, I just found your blog from reading a post on SibNet that linked to the Sibling Leadership Network blog. Thanks for writing this post, I find it really helpful!

    My current situation is that my parents deal with my brother’s DSPs, and I don’t live in the same city as they do, so I have to take a back seat and let them maintain the relationships as best they can. It’s frustrating sometimes to see how much control they want, and how little they trust the DSPs, but on the other hand we have had our share of incidents which don’t inspire much trust.

    Here’s what I find helps: every time I visit my hometown, I call the supervisor of his DSPs to chat and see how things are going. I also make sure to drop in at the Art Center where he paints 3 days a week, and speak with the staff there, while spending a couple of hours painting beside my brother. This gives me a little glimpse of how he’s doing and who the DSPs are.

    When we go on holiday together, we always make sure to buy small gifts and postcards for the DSPs to thank them for their hard work. My brother doesn’t like them all, so is not willing to spend money on some of them, so my mom and I chip in for those individuals.

    1. Sophia, Hello and thanks so much for taking the time to write! I have, on occassion, lived out of the area. It’s hard to do this remotely, right? And, it’s hard to build trust when trust is eroded with incidents. And then you have to decide, is it about a single individual? Or, about the agency? And if you were to think about switching agencies, well, that’s no piece of cake either. So many levels of things to deal with. I keep my sanity by thinking that #1 its about my brother.

      If your parents are still alive, its a good time to have a dialog about what they want later. Because that is my #2: what values did my parents have and how can I honor them and my brother at the same time. Tricky.

      Thanks again for writing. Hope to see you back here again! Kate

  5. Kate,
    A wonderful post. Wish I had read it sooner. Your brother’s pamphlet is amazing and I plan to do one for my sister Barbara. She had a new bus driver on the way home from her day program, one that didn’t know she had strabismus (lack of depth perception). The driver appeared very angry when I helped my sister off the bus, saying Barbara had tried to bite her. Barbara is 52 years old and has never tried to bite anyone in her life. The only thing I can imagine is that the driver might have been hurrying her up the steps and my sister holds onto the railing with all her strength, and will refuse to move if she doesn’t feel safe. The pamplet would be a helpful thing for all the staff, especially temps and substitute drivers. Thank you so much!!!

    1. Anne, I’m so glad you found the pamphlet to be useful! I try to look for little things that can help my brother with his independence. Honestly sometimes I am a big pain as I keep trying things. But even so, I’ll never give up! I’m really glad this might help Barbara! Are you on facebook? We’ve started a small sib group on FB. Thanks for writing! Kate

  6. Hi Kate,
    This was a wonderful post and perfect timing for me. I had just had a phone conversation with my sister’s (65-yr old DS with dementia) social worker. I asked her to call my sister’s day program to inquire about the program and then call the home because I knew the day program would complain about the lunches that she was getting. I felt like such a WIMP asking the social worker to do this, but it was because of my fears, as you so well described, of being the non-stop complainer in their faces all the time. After I read your post, I forwarded it to the social worker to help her understand WHY I needed someone else to help in my advocacy so I wouldn’t tick anyone off with my non-stop “interference.” She loved your post too and assured me I wasn’t alone in my advocacy. I love knowing I’m not the only one in these kinds of struggles. Thanks so much for sharing.

    1. Evelyn, thank you for taking the time to write! Its a hard thing to say “I’m afraid.” While we want to focus on the positives, and what our sib CAN do, we have an obligation to protect the vulnerabilities. Tough job! Thank you for sharing YOUR story. Kate

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