I am a volunteer guardian with the Legal Aid Society. I have one ward. My ward can’t talk, but has a giant smile. She lives in an apartment with 24 hour supports. She loves Reese’s Peanut Butter Cups. She made me a very glittery box for Christmas which makes my bedroom floor beautiful every day. She loves dancing. She has Down Syndrome. She also has a rep-payee to manage her social security income, pays her rent, gives her caregivers money for groceries and clothes and outings, etc. And, until she got that rep-payee, she had a family. She still has a picture of her family hanging on her wall.

I am the legal guardian for someone who’s family abandoned her as soon as they were no longer able to control her money.

Let me rephrase that.

Some people took advantage of someone with a severe disability until she was no longer serving a purpose for them.

I became a volunteer guardian because half my case load has a similar story and I figured I could provide more than case management to at least one person.

A huge percentage of my clients have family in their city, a few miles, some a few blocks away, that never sees them. They live in group homes or supported apartments. Their families stopped having anything to do with them when they got rep-payees. Or they found out they couldn’t get paid to be a caregiver 24/7 for their family member who sleeps 8 hours a night and goes to daycare 7 hours a day and doesn’t actually need 24 hour supervision. Or realized they could get more money by claiming a bullshit disability.

It’s disgusting.

I don’t care what your life or situation is like. If you can’t be bothered to make any kind of contact with your brother/sister/daughter/son/niece/nephew/etc even through a generically signed holiday card once a year unless there’s some kind of profit in it for you, you are a worthless piece of shit that doesn’t deserve to live, much less live off of my tax dollars that could be going to people that actually need it. People that you threw away.

No. You do not get to consistently make bad choices, omit half your income on applications for tax payer funded resources, lie about your status, and get away with it.

Or, I guess you can, because so many people do, but you don’t get to throw a fit when you get caught.

I’m sorry your situation sucks, but resources are too limited to hand them out to people with enough financial and informal supports just because they don’t want to take responsibility for their actions or inactions.

Consider yourself lucky that you have the cognitive abilities to make your own poor decisions, the family supports to help you through the consequences, and the financial means to continue to support yourself, even if that means not living the life you’ve been accustomed to.

Some people don’t get to choose to have a disability.

And I realized, fuck man, maybe that’s what hell is: the entire rest of eternity spent in fuckin’ Case Management.

After several back and forth phone calls on Friday with the Aurora St. Luke’s Medical Center’s Social Worker and Nurse regarding discharge plans, I was kind of expecting at least a voice mail letting me know when my client was discharged.

Especially since we hadn’t actually established which services he’d be needing in the community. The only voice mail I have today was left by a provider needing authorization for services they started providing on Saturday.

Because I didn’t specifically tell the Social Worker we need to know exactly what my client would need upon discharge and we would need to authorize it prior to him being discharged and, because he is consistently non-compliant with medical advice, I would need to be directly involved in discharge planning to help make sure he is getting the best services for him to ensure recovery in the community, and prevent readmission.

Apparently the needs of the hospital to get the patient out of the hospital before the weekend trumps the actual needs of the patient.

I spent the past few days arranging the discharge of a client from the hospital. He needs to have IV Antibiotics for 2 weeks, and would need a home health agency to do some cares for him outside of a hospital. No problem. He was all set to go back to his group home, which made special arrangements with the staffing schedule so he would be able to stay home during the day (the home generally isn’t staffed from 8am-3pm because all the residents go to a day program). The social worker at the hospital was going to make arrangements with a home health agency to go to the group home every day for skilled nursing cares. Everything was going to be just fine.

Until today. I get a call from the home owner saying the hospital can’t find a provider for home health care. Ok. There are like 6 gazillion companies that do this. That makes no sense. I called the social worker at the hospital, who redirected me to the intake coordinator for one of the providers where I found out…

Medicare won’t cover outpatient IV antibiotics so, instead of going home with a home care agency in place to manage the PICC line, my client has to go to a nursing home for 2 weeks for absolutely no reason. Thousands of dollars difference in cost for care, in addition to an increased risk of infection, wounds, communicable diseases, and readmission to the hospital. Nursing homes are just lovely. You’re welcome, taxpayers.

If you want to know why health care isn’t affordable, it’s because shit like this, and completely not like this but just as stupid, happens every day. More than once. One bill isn’t going to fix that. It’s not even going to scratch the surface. But, hey. At least everyone can at least be financially covered while some politicians pretend they’re going to do something to fix things. Don’t get me wrong. I think it’s great that everyone gets health insurance. I’m just not going to sit here and pretend that makes health care more affordable or fixes anything wrong with the quality of care. Or the lack of emphasis on prevention, education, and community health. Or the way things are billed. Or the way records are kept. Or the lobbyists that influence every single decision made by politicians. Or even the overall uneducated and/or non-compliant American population. Seriously. Do you know how much Type 2 Diabetes and its complications cost to manage and treat every year? A lot. Type 2 Diabetes and its complications are almost 100% preventable. Twenty per cent of antibiotics prescribed every year are completely useless.

America’s got work to do and no one willing to do it.

So, I guess we took a tiny step in the right direction. Great. That’s enough. The bigger issues are all the way over there. But at least we made a little progress. 

Member-centered outcomes.

That’s the new hot topic issue case management teams around my state are being encouraged to focus on these days.

And that is great. If you are developing a care plan for someone, it should really focus on their goals. Their “hopes and dreams,” I guess you could say. What do they want and/or need to have the best quality of life?

We had a training today on member-centered outcomes. Specifically, how to write them. It’s simple, really. 

Member-centered outcomes must be:

1. Personal
2. Measurable
3. Non-Purchasable

Sound simple? It isn’t.

The question asked of us was “What does ‘measurable’ mean to you?”

It means “objective.” As opposed to “subjective.” Is your goal to simply be happy? To be healthy? Too bad. That’s not measurable. Try again. I won’t go into the details of communication barriers when, like me, you work with a specific population of people (developmentally disabled), but here is the example of a measurable outcome provided to us for someone who is non-verbal:

Staff and care management team observe that member is happiest when her daily activities incorporate picture books.

It’s personal because the member wants to look at picture books. It’s measurable because it is a daily occurrence. It’s non-purchasable because it is an activity. 

You know what the problem with it is? 

It’s not an outcome. It’s an intervention. It is an intervention designed to help meet an overall outcome of “being happy” which is not measurable because, I’m going to tell you a secret.

Personal outcomes are not measurable. They are subjective. You cannot place values on Quality of Life. Interventions are measurable. Evaluating the effectiveness of the interventions in meeting the outcomes is measurable. An outcome itself is not measurable.

Maybe I over-think things, but this is driving me crazy. Because it is wrong. It doesn’t make any sense. And this is how we’re doing things now.

One of these days I will just accept that, sometimes, things don’t make sense, and the Majority is going to just go along with it anyway. Then I will be happy. Ignorance is bliss, right?

I’m just sayin.

Common sense is not so common.

It would be wonderful to live in a magical land of ponies and rainbows and unlimited state funding but, alas. We don’t. Perhaps until we do, the people at the resource center could be a little bit better trained in the fine art of actually taking a passing glance at their own handbook to determine the services the case management team does and does not provide. Then they can give an accurate answer to people when they call, and save the rest of us from angry phone calls.

Or: I’ve always wanted to just make shit up as I go and get paid for it. I wonder if the resource center is hiring.