There have been a couple of things I've read lately that talk about the issues that develop when we try to take great concepts like person-centered planning and "personalisation" and try to make them work within our long-term care systems.

The first is an article, Personalisation was supposed to empower vulnerable citizens. It failed., written by Simon Duffy, who founded In Control United Kingdom. Simon talks about "personalization", (which he describes this way: "At its simplest this means moving away from standardised services, towards a flexible system where people have more control and play a bigger part in their community.") This a great concept, yet Simon says that it has failed.

A second article, The Trouble with Person-Centred Planning, was recently written by John O'Brien, one of the people who first helped developed the concept of Person-Centered Planning. In this article, John writes about the problems that happen when we take great concepts and systematize them. Thankfully it seems that John believes "... we have the capacity to host occasions to become present to each other in ways that generate power by parting the veils of indifference that separate us."

So what do you think? Are these innovative ideas failing people within the long-term care systems?

updated by @deb-wisniewski: 02/23/16 03:06:02AM

I hesitate to say things because I am part of the "system" that aims to personalize and individualize at it's core. What I can share is observation and thought. What I have noticed, over my ventures of this past year, is that while there is an aim to "do it right".... failure becomes a question when the attempt is aimed at finding a "one size fits all" method of going about it.

That's where I see it go wrong. Trying to find answers for "the whole" when "the whole" is made up of many, many individuals who are unique in most every way. I believe as we look for answers, and attempt to actualize the concept, we can easily tear down it's very foundation. Because of this we need to remain cautious but not paralyzed by it. As a friend of mine says "we have to 'Keep it Simple'"; yet keeping it simple can be very hard when the scales are tipping so fast and furious. It's all for the right reasons, but the snail pace of bureaucracy can quickly lead to a paralyzed system. It's up to all of us to keep it going in the right direction with advocacy and learning from one another.

As you know Carrie, I look at this kind of thing from both an asset perspective and a community development perspective. And through that lens, I know that systems tend to have a heavy "magnetic pull".... In other words, it's so easy to take good, real life ideas and "systemize" them so much that they lose their magic.

And I don't blame anyone for that. It's almost like it's the nature of the beast... I mean the nature of systems to try to do that. One of the jobs of a system is to focus on quality and that's interpreted as being something you can count on to be the same every time - same product, same process, same outcomes. So it's a catch 22 to try to make anything person-centered the same every time.

So I think you're right, Carrie. I think that we need to continually be mindful of what we're doing in the person-centered and personalization. Are we keeping it real?

Thanks for sharing that perspective Deb! As always it's that little "something to think about" that you give that makes one think a little deeper. I appreciate that.

Carrie

Focusing on person-centered planning sounds like a good thing and perhaps could be a good thing, however, in my experiences anything which involves a "system" via the State of Wisconsin is difficult to say it's person-centered. for example, I see SDS as an attempt as person-centered personalization, however, the system that provides the funding has the final say. So my question is..........is it REALLY person centered? And the State also knows there are drawbacks to this also, one example is in the rural areas we don't have access so some of the services. So what do people do? Not have that unavailable service and then the State saves money, so they think. In the long run, not really. those persons who are on Family care, I believe are not truly person funding. I say this because prior to my becoming part of IRIS, I was on Family Care, and I was told I make the decisions, however, I did not get to make the deicsions. So where does the person centered personalization come in? Or am I misunderstanding this whole thing?

I had an occasioin recently when a newer person came aboard, and I can honestly say that this person made me feelthey was part of the system and did not know whatthey was talking about part of the time. Very reminescent of the system as I have experienced it in the past. As time goes along, I more and more think this phrase may make SOME of the higher ups, as I call them, feel better but again my question is, for which participants?

Thanks Wanda for your response to this... I think your perspective is very valuable for all of us to consider when we have a role in running any of the systems that affect people's lives. What are we doing that really comes from a person-centered perspective and what are we doing because we're part of the "system"? And when do have a choice about this and when do we not?

I don't think there are easy answers to any of this. I think it's good to keep asking the questions - of ourselves and of the systems - even if there isn't an answer right away.

I agree with Wanda. I want so much to have my son in iris and the idea of person centered, but because his needs are so high ($) he his on family care. We have had many roadblocks to getting him the services/equipment he needs. It is a long process to get anything approved. Many things are denied. It wears a person down after a while, but I won't stop advocating for my son.

Meg, toitally get the frustration of getting denials, etc. People on the other end of the system who should be reviewing these things, I dont' think they really understand what all of us are dealing with.

My stubbornness and bullheaded determination can be a detriment to me if I'm not careful, but they are what has helped me to persevere.

I've never been a parent, but I understand the wearing down and keeping picking oneself up to keep going because either ourselves or someone we care for needs us to be. i don't give up easily, however, I'm also not afraid to voice what I've been up against.

The system most certainly be what keeps people from progressing beyond a certain point, in my experiences.

Thank you so much for your honesty Wanda!

Hi Meg -

You might want to double-check about whether IRIS would work for your son. My understanding is that eligibility for IRIS is NOT based on the level of support you need. Rather, IRIS is based on the idea that a person who uses IRIS wants to self-direct all their supports and cares (the person can have the help of family members, guardians, etc to do this - they don't need to do it on their own).

What this means is that he (with help) would be making the decisions about what supports he gets, who helps him, where he gets his services, etc. There are still approvals required for his plan but I think you have a lot of more control and say over what you get...

Hang in there!

Yes, I switched to IRIS, and I'm in an area where many services are not aviailable, so I"m getting better service than I did on family care.

I contacted local ADRC and asked people at the state level and was told if his needs are above a certain $ amount each month that IRIS would not be the right program for him. He has significant needs. I wish Family Care agencies and IRIS agencies could collaborate so Family Care could be more person centered. Or...why not have one agency that does what is best for people with unique abilities? It seems logical to me. How bout it Wisconsin? One stop does it all for all.