The Demise of Individualized Care

Our long-term care system changed many times within the past ten years. First, in the 1990s, we had a system by which people were simply indicated for whatever type of setting they were thought to be most suitable for. For example, an older person might be indicated for a somatic or psychogeriatric ward in a care home or a nursing home depending on their condition and care needs. Settings were paid on a one-size-fits-all basis. For example, general care home wards were initially paid for one hour care per patient per day, regardless of the patients’ individual needs. Most or all psychogeriatric care homes (I don’t know about somatic homes) eventually got “substitution”, which meant that they were paid for two hours of care per patient per day, still regardless of the needs of the individual patients.

This system was finally abandoned in 2003, when the so-called “functional indication” was introduced. This means that people were no longer indicated for a certain type of setting, but for residence plus a combination of several different types of care, such as domestic, personal or nursing care, support and/or treatment. The problem with this system was that you had to know pretty much exactly what the client would need, before they could be indicated properly. They also had to be re-evaluated each time they needed even slightly more or even different types of care. For example, suppose you were approved for support in a sheltered living accommodation due to a mental illness. If you had a relapse and were unable to care for your personal hygiene for a while, you would have to be re-indicated to add personal care. Uusally, however, your case manager would know that you might relapse and would ask for some funding for personal care just in case.

The good part of the old system, however, was that you could actually fill in indication request forms quite individually. If a person actually needed, say, personal care, even if all other clients in that home (say, a mental health sheltered living accommodation) didn’t, you could just ask the indication board to approve that one client for personal care. It was also possible for you to make it clear why one person needs intensive support because of serious behavioral problems, even if they don’t have a problem remembering to bathe. That way, you might get support approved in class six (13-15.9hrs/week) without any need to pretend your client needs to be reminded of their personal care. As a side note, another great thing about the old system was that all types of care and care grounds (the reason you’re in long-term care, ie. your disability) were equal. Therefore, it wasn’t like, if you moved from the developmental disabilities system into the mental health system, you’d have to be assigned a different classification number and have to pretend to have different primary needs, in order to receive the same care.

But, of course, the system wasn’t good as it was. At one point, the legislature realized the problem with shifting care needs and the accompanying need for constant re-assessment. So it wanted to create a system by which a client and care provider can, within certain limits, make individual agreements about what specific care the client will receive. Send in the care packages!

“Care package” sounds cute in a way. It seems to me, in fact, that “package” is the newest fashion word in healthcare: the 2009 budget cuts to long-term support are formally called the “package measure”, and I have no idea what that comes from – maybe because they don’t care about the individual anymore but are just cutting the entire bunch as one “package”? That is also what the care package is about: lumping together individuals with superficially similar needs or who happen to live in similar settings, in one category, with its assigned care ration. Actually, I don’t really understand how this is different from the system we had before 2003, but with different terminology. Back then, an older person with severe dementia might be indicated for a psychogeriatric nursing home ward. Now they’re indicated for “sheltered living with intensive dementia care”. I’m wondering what the difference is.

Like before 2003, the system is splintered: there are different subsystems for mental health, physical disabilities, developmental disabilities, nursing homes, and for some reason a separate subsystem for youth with a mild intellectual disability. These different subsystems are not compatible as far as classifications go, like I illustrated with my post on “intensive” support. It is also quite likely that a person with multiple disabilities could fall under different subsystems depending on arbitrary circumstances. For example, a person with a mental illness and a severe physical disability would fall under the mental health system if they lived in a sheltered accommodation for the mentally ill or received treatment in a psychiatric hospital, but that same person would fall under the physical disabilities system if the sheltered accommodation primarily served people with physical disabilities. Depending on this circumstance, the person would fall within entirely different care classification systems. If they lived in a mental health living accommodation, they’d fall under class 6C (there’s also 6B, but that is for treatment in a mental hospital, I don’t know whether 6A exists), “sheltered living with intensive support, personal and nursing care”. This package would entitle them to between 20.5 and 25.5 hours of care a week. This is the highest care classification within the mental health living accommodations system (I think I mentioned class 7 in another post, but there is only 7B), so I’ll assume that if they need more care than this, bad luck for them. On the other hand, if they lived within a sheltered living place for people with physical disabilities, they’d fall under that part of the care classification bureaucracy. Again, they’d likely be put into class 6, which is here called “living with intensive support and intensive personal care”. Now, our consumer is in a wholly different position, since not only can they be upped to class 7 if they end up getting worse mentally or physically, but even class 6 entitles them to 28 to 34 horus of care a week. Note, here, that, while the emphasis is placed differently in each user guide, globally speaking the needs our hypothetical consumer is supposed to have, are pretty much the same. For some magical reason, mental health support workers can do the same thing physical disability support workers do in 28-34 hours, in 20.5-25.5. I wonder what fabulous efficiency training mental health workers got: if we’d give this same training to every care provider, how much money could we save?

Another problem is that you can no longer qualify for services on multiple grounds. Within the care packaging subsystems, some accommodations are made for people with multiple disabilities, as in the case I mentioned above, but as you can see they are pretty arbitrary. Back in the good, old days before the care packages, I qualified because of both blindness and autism. Now my qualifying ground is autism, and the indication bureaucrats have no understanding that blindness could be influencing my care needs. Only if I needed help with self-care due to a physical disability could I be put into a class that acknowledges that I have another disability. Disability, after all, means being in a wheelchair. Yeah, right. As a side note, I know a blind person with no other disabilities who is going to move to an accommodation for the physically disabled; I wonder what class they’ll put her into. If it’s class 2 or higher, she’ll be entitled to more care than I’m entitled to.

Lastly, I have to point out that the descriptions of the different care classes are very rigid. As I wrote in my post on “intensive” support, mental health patients within class 3 are supposed to need guidance with their personal care. On the other hand, they are not supposed to have singnificant behavior problems. These don’t crop up in the user guide till class 4 or 5 (I think class 4, while an introduction to the changes for 2009 said this class would be reserved for those who needed personal care due to somatic conditions), which entitle patients to significantly more care. What if you have no problem with personal hygiene but you do have significant behavior problems?

Now, do the care packages actually solve the problem they aimed to address, that is, the inflexibility within the former system? In a sense, they do, since all recipients are indicated for both support and personal care. However, recipients are not indicated for nursing care unless they’re in a high class in some systems, and only those in the nursing home system are indicated for domestic care. In that sense, some inflexibility is removed, but a lot remains, and I maintain that the inflexibility in the old system could’ve been solved by making rules that indications should not necessarily be applied literally if the client is served best by a slight twist of the original indication. On the other hand, with the partial solution to the inflexibility problem, a new problem (or rather, old problem, since it was the reason the functional system was implemented) appears: that people are no longer evaluated on the basis of their individual needs, but on the basis of what broad yet rigid categories they (or the agencies providing care for them) belong to.

Adult Autism Outcomes Vary Considerably, Study Finds

A recent study* examined adult outcomes on education, vocation, independence, friendships and intimate relaitonships, for people with autism spectrum disorders. Comparisons were made between adults diagnosed with ASD in childhood and those diagnosed in adulthood, and between people with and without comorbid intellectual disability. It was found, not surprisingly to me, that the presence of intellectual disability was a significant predictor for poor functioning. This is, however, not supportive of different forms of autism, but rather, of the fact that multiple disabilities interact and complicate a person’s situation, usually leading to poorer outcomes as compared to people with either disability alone. I’d have liked to have seen an analysis of the outcomes of people with and without comorbid mental illness, too, but I assume there is a reason this wasn’t done.

With regard to comparisons between people diagnosed in childhood to those diagnosed in adulthood, there was no difference in functioning when people were assessed prior to age 25. In other words, for autistics under age 25, there is no reason to assume they must function better or worse if they’re diagnosed after age 18, than those diagnosed in youth. For those who were over 25 at the time of assessment, there was a difference in functioning between those diagnosed in childhood and those diagnosed in adulthood, but this difference may be explained by the fact that those diagnosed in adulthood were on average about ten years older than the childhood-diagnosed group at the time of assessment. Therefore, they had approximately an extra decade to “catch up” in functioning. It is quite possible that the childhood-diagnosed group would function at an equivalent level if they’d been of the same age to the group diagnosed in adulthood.

The authors, lastly, emphasize the extreme variability in functioning found particularly within the group without intellectual disability. Note, however, that this was the vast majority, so I don’t think there is any reason to conclude yet that those with intellectual disabilities are uniform in functioning; their subgroup size may’ve been too small to be able to judge that. The attainment of intimate relationships was the goal least likely to be achieved, but even on this domain, there were people who achieved appropriate functioning. With regard to the other domains, there was huge variability, from people living in isolation on disability benefits to a successful university professor. It is unclear what factors actually influence these outcome variables: the authors say that few people studied had ever received targeted interventions (ABA, etc.), but a generally supportive school and home environments did contribute to better adult outcomes.

* Marriage S, Wolverton A, and Marriage K (2009), Autism Spectrum Disorder Grown Up: A Chart Review of Adult Functioning. J Can Acad Child Adolesc Psychiatry, 18(4):322-328.

What Does “Intensive” Support Mean?

As I wrote yesterday, my current care class is said to be living with “intensive support”. When I initially found out that’s what it’s called, it sounded rather negative. My understanding of “intensive”, after all, was grounded in medical terminology: “intensive care” is, in this respect, the part of a hospital setting where the most severely ill patients are cared for. I was at the time a patient on a locked ward, which is sometimes generally said to be the “intensive care” of psychiatry. Now technically speaking my ward wasn’t an “intensive care ward”, cause that was the other, higher-staffed, locked ward. But mine was still a locked ward, which hopefully means patients must have pretty high care needs.

However, as I said, I had care class 3. There are seven care classes in mental health. Class 3 is way too low to qualify for services on a locked ward. Yet my guide to care classifications says it’s “intensive support”. And I don’t mean that’s just the name of the care class: throughtout the explanation of the care needs supposedly experienced by people in my class, the word “intensive” is used repeatedly. For example: “Due to your psychiatric problems, you continuously need intensive support in a sheltered living environment.” Continuously needing intensive support? If that’s what people on my ward supposedly need – as I said yesterday, class 3 is a fairly normal class for reso’s patients to be in -, how can staff leave all patients alone for pretty large chunks of time (eg. if they’re in a meeting or visiting the unstaffed third reso ward), and is there only one nurse for about fifteen patients on many of the other times (all week-ends and some evenings)?

I am not saying that there is a problem with the staffing here, in the sense that reso somehow is doing something wrong. If I were even remotely implying this, my psychologist would tell me to my face that I can’t expect the ward to get extra staff and that it isn’t a locked ward after all, in a tone of voice as if my care needs are unreasonable and I should just pull myself together and show that I fit the reso mold (even though I’d said nothing about extra staff or locked wards, the reason she told me this was that I raised a concern about the million meetings). Anyway, I’m going to assume for now that the agency’s management isn’t throwing money down the drain and actually provides the care they’re supposed to according to the care classification reso falls under on average, ie. care class 2 or 3. (For the sake of completeness: the wording on care class 2 is much less negative, with a lot of “You can do many things independently” thrown in where class 3 has “it’s difficult for you”; however, in terms of hours of care, there is little difference: clients in care class 2 are entitled to between twelve and 14.5 hours of care a week.)

Then, if assuming that reso is actually putting the money they get for our care to good use, the reason we’re not nearly getting “extended” (care class 2) or “intensive” support, in my definition of the words, is to blame on the creators of the care classification system, or the people who translated these classes into appropriate budgets.

First, in the general field of social care, it isn’t at all uncommon to assume that fourteen hours of care a week is “intensive”. In home care, in fact, ten hours is already “very intensive”, and it’s very rare for you to be able to get more than that. However, note that home care is usually provided to an individual, while the care time allocated in residential care packages, is supposed to include both group and individual activities, so mealtime counts even if you wouldn’t need someone supervising you during meals if your care were individualized.

With regard to other forms of residential care, I notice the word “intensive” is used much less loosely. In the user guide to care packages for developmental disabilities, the word “intensive” doesn’t appear till class 4, which entitles recipients to 18.5 to 22.5 hours of care a week (I’m using the care hours including day activities). In the system for people with physical disabilities, the word “intensive” doesn’t even appear till class 5, whose recipients are eligible for between 26 and 32 hours of care a week. (For clarity’s sake: the amount of care you are entitled to if you’re in a certain class, differs depending on what system you fall under. Mental health generally entitles its recipients to relatively little care. I will write another post on the idiocy with different systems within essentially the same buraucracy sometime.) Only in the nursing home system does the word “intensive” pop up in reference to a class entitled to less care than those in mental health: people in class 4 of the nursing home system are entitled to eleven to 13.5 hours of care a week. Note, however, that nursing homes get extra funding for domestic care, while all other agencies don’t.

One last note on rationing of care hours I have to place, is that care of course isn’t distributed evenly over the day, but in most situations, agencies still need to be able to provide 24-hour available staff in case there’s an emergency. If all patients are entitled to, say, fourteen hours of care a week, you however can’t just have a one to twelve staff/patient ratio at all times, since then you’d need to bathe some patients at 2:30 AM, so to speak. I am not sure anymore whether agencies get paid extra for “residence”, that is, the fact that even though patients don’t literally need or get 24-hour care, they still live in the setting 24/7. In the old care system (the one that was replaced by the care classes stupidity in 2008), I think they did, and I do think they still do, but I have no clue how much.

Concluding, I’d have to say that whoever created the terminology behind these care classes, has no clue how the system actually works. No-one on my ward gets guidance with their personal care, and very few are accompanied by a staff most of the time they go places. Yet this is what the user guide says people in my care class need. It might be true that people who need intensive support need this care, but then at least could the Powers That Bureaucratize actually provide the money for that?

What’s Another Year for Someone Who’s Stuck in the System?

It’s been another year in psychiatry, and I have no clue what to write about. It’s not like I could do a progress report, since I made little progress, but a cynical list of lessons learned from staff attitudes, like last year would get boring. Besides, most of the time on the resocialization ward, the staff isn’t personally to blame for frustrations I experience as a patient. Of course, at the end of the day, it’s still the staff who might be putting me into time-out, but the external factors that cause my crises, are not the staff’s personal fault. They have to work within a flawed system, after all. Therefore, here’s a list of reasons why the system sucks:

• Quality of care is determined by how many times staff discuss something possibly remotely related to care in meetings, away from the ward.
• The wards with the highest staff/patient ratio are responsible for filling in for wards with fewer staff, thereby causing their own wards to have a shortage of staff. Same if a little-staffed ward is determined to need extra staff.
• When staff are on leave, the senior nurse may have to work an actual shift, but management tasks have priority over patient care. (Note: this isn’t meant as criticism of our senior nurse, who actually tries to take time for patient care – in fact, she actually took time to speak with me this evening while she was working a substitute shift on the less-staffed other reso ward -, but as a criticism of the healthcare bureaucracy.)
• If a substitute nurse works regularly at the same ward, it is common for them to attend that ward’s staff meetings even though they are not part of the team.
• It doesn’t matter how much care you are entitled to according to your “indication”, since agencies don’t get paid per individual patient, but for the general “heaviness” of the care they provide on their wards.
• Even if you could get the care you were entitled to (which as I said isn’t the case due to the way the funding system works), you need to spiral down into full-blown crisis before the funding agency might put you in a higher class. They don’t seem to realize that preventing crises ultimately saves money.
• As a general note on care classifications: my current care class 3, “intensive support” (which means, among other things, that you presumably need guidance in your personal hygiene and often can’t go places on your own), entitles a patient to on average 13.5-16.5 hours of care a week. This includes everything, including every group meeting on the ward, mealtime, help or guidance with chores, going places with a staff member, help with paperwork, both group and individdual day activities and therapies, crisis intervention, etc. I just counted and got to fourteen hours routine care a week, but I did not count any unplannable/irregular care, and I’m pretty sure that would up the total amount of care I get quite a bit. And just FYI, I don’t get help with personal hygiene. Also, our senior nurse says that on average, clients on my ward have care class 2 or 3, so apparently “intensive” means the staff are unreachable half the time.

These are all things the staff can’t help, but it gets really frustrating when the staff end up telling me that I really can’t expect to get the care I need. Maybe not here and now, but if you get to word my care needs as unreasonable and expect me to hide them, it is unlikely that they will ever be met unless I end up in a terrible crisis. And even then, the most likely consequence is a few hours in a time-out room.

Invisible Disabilities, Accommodations, and the Obligation to Explain

The movie of Jodi Picoult’s My Sister’s Keeper came out last summer. I haven’t seen it, but I read the book in 2005. Over at FWD/Foward Ouyang Dan writes about invisible disabilities, as it relates to a minor theme in the book. Campbell Alexander, the lawyer who takes on Anna’s (the protagonist) medical emancipation case pro bono, has a service dog. He isn’t blind, and, whenever he enters a public place, people tell him that no dogs are allowed. When told that it’s a service dog, everyone responds with something along the lines of “But you aren’t blind, are you?” Campbell Alexander uses different excuses for owning the dog, among which bizarre ones like the dog keeping him away from magnets that could cause trouble with his iron lung and the dog translating for his Spanish-speaking clients.

Note that there is a real, valid reason why Campbell Alexander owns a service dog, but it doesn’t become obvious until towards the end of the book. Ouyang recently reread the book and says there are clues to the function of the service dog throughout the book. I can’t remember these. In fact, I assumed that the dog wasn’t really a service dog and that Campbell was just having a sense of entitlement. Despite the fact that he takes on Anna’s case pro bono, it looks throughout the book that Campbell really has more self-serving motives and doesn’t have the clients’ best interest in mind. Maybe that’s just how I looked at it though, since I have no clue how family court hearings tend to go. In the book, Campbell Alexander constantly interrupts opposing counsel (Anna’s mother) with objections and even asks the judge to remove either Anna or her mother from the home pending the case. The guardian ad litem, to whom Campbell has a complex personal and professional relationship, makes it seem like he is a rather self-absorbed man. I pretty much incorporated that into my stereotype of lawyers, and took it to be a correct representation of his character.

Now of course even if someone is an arrogant, self-absorbed jerk, that doesn’t mean that he can’t have a valid invisible disability entitling him to a service dog. However, I took his apparent refusal to explain about the reason for his service dog, as further evidence that there was none. You know, I couldn’t imagine at the time that maybe your disability status is private and you aren’t obligated to share it with random strangers. My only disability identified at the time, was visible, and even with regard to my invisible disability, I am pretty open. My opinion at the time was: if you have a valid reason for needing an accommodation under the ADA (such as access with a service dog), you should be able to explain this reason. Well, maybe you should be able to, but are you really supposed to tell a waiter at a restaurant all about your disability? At the time, I thought so.

From there on, I automatically assumed that Campbell Alexander was faking. You know, the dog was just a regular dog, but the owner had a huge sense of entitlement and thought his being an attorney made him eligible for access with a dog. Even way until the near end of the book, when the dog starts barking loudly in the courtroom and Campbell refuses to remove it, I assumed that he was really feeling better than the judge. Even if it is a service dog, it should behave itself, right? I couldn’t imagine that maybe there was a reason that dog barked, until the reason Campbell has a service dog in the first place was shoved right into all other characters’ and my face.

If I had this attitude towards characters in a book, I’m pretty sure I’d have had the same attitude towards people in real life. Of course, in the book, the arrogant lawyer stereotype helped me form my opinion, but I could be having the same prejudices about real people I met. Actually, if I were in a position of authority, and someone with an invisible disability requested formal accommodations without a proper explanation, I’d still look upon them with suspicion today. It is, after all, different to write that disability status is private on a blog, than to act upon this opinion in real life.

Socialist Party May No Longer Keep Its Members’ Salaries

Guusje Terhorst, the internal affairs minister, has a plan to end the option of having representatives’ salaries go through their parties before flowing into the members’ bank account. The reason is the fact that the Socialist Party requires its representatives to donate part or all of their salary (depending on whether they are MPs or local representatives) to the party. Oh well, precisely speaking, the party gets the earnings for its members and then pays the members whatever it sees feasible.

Agnes Kant, SP leader in the House of Representatives, asks whether Terhorst, who is a Labor Pary member, doesn’t have better things to do than “teasing the SP”. While I agree that there are probably higher priotities for an internal affairs minister, I don’t see how sending payments directly to the people who work for them, is “teasing the SP” (unless the idea of working for your money is “anti-Socialist”, of course). After all, Terhorst isn’t saying that MPs cannot donate their salaries to their parties. If they agree with the party head honchoes that this policy is fair, they can still send their money to the party as they please. The party can even kick out MPs who refuse to send their monthly donations – only then it would be more obvious to the general public that the party’s MPs buy their seats. Now that sounds a lot less socialist indeed, but is it any different? Ali Lazrak, a former MP, got already kicked out in I think 2004 for refusing to have the party take part of his salary. Of course, there were lots of SP members, including myself, who said it was okay to kick him out, because he knew beforehand that he’d have to accept a lower wage if he wanted to be on the Parliament for the SP. After all, this policy is outlined prominently in the flyer every new member gets. I didn’t think of it as buying a Parliament seat at the time, because I went along with the party rhetoric of accepting a modest wage rather than grabbing big money at the expense of ordinary people. Now of course this rhetoric would’ve made sense if the money the party earned from its members accepting lesser wages, actually went to the poor. In reality, it goes into expensive promotion campaigns. Now what does that do for the hypothetical laborer, nursing home patient or welfare mother the SP is supposed to serve? Okay, I have to say that the SP is probably the most involved in direct community action of all political parties, but a lot more could be done if it just didn’t value expensive self-promotion that much. I think if the party spent donations from its reps on actual community action, many reps would be eager to donate.

Of course, that is only as long as the representatives can actually afford to donate. You know, City Council membership takes up a lot of time, but SP members in this position are still supposed to donate their entire salary to the party. That way, how will the SP keep its promise, also prominent in its newbie flyer, that members will not be penalized financially as a result of their party service? I don’t assume that every local SP member who declines a position as a City Councillor because of the financial consequences, is a “big grabber”, but apparently, Agnes Kant does.

Social Security Administration Required to Send Letters in Accessible Format

Joel of NTs Are Weird wrote about a federal court decision that mandates the Social Security Administration to send letters in accessible formats to people who are blind. I honestly wonder what the different associations of the blind think of this. After all, I think it is reasonable that a government agency, that sends out privacy-sensitive information, would send its letters in a format that the recipient can read independently. Is it reasonable to expect blind people to have readers read their SSA paperwork to them? I have my social worker do this, but this already sometimes leads to problems, for example when she quickly scans the letter and then tells me what she thinks it says I should do, rather than reading the letter aloud and only then, if I can’t interpret it independently, helping me make sense of it. Now my social worker knows about the benefit system, but what if someone unfamiliar with the system went on to “interpret” the letter for me rather than reading it? And that’s only when I assume that whoever I were to choose to read my mail, were trustworthy. Besides, even if a reader is trustworthy, they still could be using the information against you, for example, if they wanted to use it to “prove” that you can’t handle your own finances – and you don’t have to be a financial disaster to get that thrown at you.

Of course, people can read their letters independently, if they scan them using OCR software. This can be a lot of work if you’re not good with technology, but it can be done. However, it will likely lead to unnecessary delays, since blind people will have to scan and read all their mail before they can tell what is important: they can’t see that this is an urgent SSA letter and that is a letter addressed to the person who lived in the home before they moved here three years ago, but who never changed their address (a considerable portion of “my” mail!). I think it is really more efficient even for the SSA to convert letters into accessible formats with simple text-to-speech software and a braille printer, than to deal with the problems resulting from blind people either not noticing that they got an SSA letter, not reading it, reading it with a delay, or misinterpreting it because their reader made a mistake.

Comments on the New Long-Term Care Legislation

I finally received a new issue of the small guide to Dutch social security, which I have been subscribed to for years. Normally, this guide appears twice every year, but I didn’t receive one either in late 2008 or early 2009. I assumed somehow the library for the blind had decided I didn’t need it anymore – which is technically true, since I needed only the 2007-1 issue for my studies at Saxion, but I never unsubscribed.

Anyway, I had been waiting to see what the guide says about the 2009 changes to our long-term care act, so I decided to read that chapter. For your information, the act was amended in 2009 to narrow the eligibility for “support”, one particular “function” (type of care) in the act. Support is described as “the activities, provided by an agency, to people with a condition, impairment or disability”. Pretty vague, huh? I permanently deleted the 2008-1 issue of the guide, so I can’t look up what it said there, but I seem to remember it was a much clearer description.

Oh wait, the description doesn’t end there. It goes on to describe not the type of care delivered, but the people eligible for it: “These people have moderate or severe impairments in social capacity, mobility, psychological functioning, memory and orientation, or display moderate or severe problem behavior.” It isn’t like you are eligible for support because you need it to function in your daily life – as is the case with all the other types of care -, but because you have a certain specific impairment, that supposedly means you need this support.

Oh, wait again, the description goes on: “These activities are aimed at enabling the recipients to remain functioning as independently as possible. That way, they can magage longer at home and admission to a residential setting or self-neglect will be prevented.” But isn’t support a standard part of your “care package” if you are in residential care? I checked all user guides for residential care – I fall under “mental health” -, and it is. Okay, I think I need to take it less literally and assume it is the need for more restrictive services that is hopefully being prevented. The guide adds for clarity’s sake, that the prevention of isolation and lack of social participation is explicitly *not* covered. So I guess we have to wait until a person who stops participating in community life and starts being isolated, spirals down into massive psychological meltdown before he’s eligible for help.

There is another problem with the so-called “prevention” in support: most people affected by the change of legislation, have received support for years. They all need to be re-assessed before the end of 2009 or before their current eligibility decision (“indication”) ends, whichever comes first. I enjoy the luxury of being “indicated” with the exact same care package I earned in 2007, in December of 2008, effective till December 22, 2009. The question is not whether I will lose services – the indication board’s strategy for implementing the amandment is to cut everyone’s funding and see who complains -, but how much.

What the people in charge of the amenbdment and its implementation fail to realize, of course, is that people who’ve had support for years, might actually function well because of this support. Therefore, an almost automatic cut in funding “because the recipient seems to function alright” may lead that person to fall apart again, because it was precisely the support they received that caused them to function alright (and “alright” is to be taken broadly, since no-one I know of actually functions normally even with support). People also may not get time to get used to the new situation. Those who retain their support but only get cut on hours, are not entitled to a transition period at all, regardless of when in 2009 their assessment was carried out. People who lose all of their support after their re-assessment, can transition for up to nine months, but only if they were re-assessed in the first three months of 2009. Those people being re-evaluated between October 1 and the end of the year, will only have transition time till the end of the year. Apparently, those who, like me, have their “indications” running till December, are supposed to have known about the new legislation (despite the fact that I at least never received a letter to that effect from any government agency), have guessed magically that they’d lose all their supports, and have arranged for volunteers or family members to take over what their support workers used to do, all before the official decision about their services is made. Note here, that we’re talking about vulnerable people. Most people receiving support are not actually capable of following what goes on in legislation. Hopefully, they all have good case managers who do follow legislation, guess correctly who of their clients will lose services, and make the transition out of services, if determined necessary by the Powers That Bureaucratize, go as smoothly as possible.

Should Psychiatrists “Diagnose” Public Figures in the Media?

I read in a Dutch newspaper that Bram Bakker, M.D., a well-known psychiatrist, was criticized by the Dutch Association for Psychiatry for having commented on Dirk Scheringa, director of a recently collapsed bank, in a TV show. The association has a position against psychiatrists “diagnosing” individuals they haven’t assessed via the media. I can see the point, even though it won’t even get you officially warned by the medical malpractice board if you make an actual, clinical diagnosis: when political murderer Volkert van der G. complained about another psychiatrist having “diagnosed” him with Asperger’s via the media in 2003, he was dismissed precisely because he wasn’t in a patient-physician relationship with the man. Even so, of course the association can decide differently from the (not affiliated with any association, established by the government) board, and I think they have good reason to disagree. After all, it is quite likely that the board’s reason for dismissing Van der G. was not anything related to the content of the case at all, but the simple fact that their legal responsibility lies only with individual healthcare provision. A professional association, however, is concerned with the wider reputation of its membership. I can see how this could be harmed when psychiatrists make seemingly random diagnoses via the media. Professional associations have to set clear standards on what is and isn’t acceptable – and I think this needs more attention with the increasing popularity of social media. Now, psychiatrists could theoretically not just “diagnose” public figures, but anyone with an active account on a social media site. Twitagnosis? It already exists as an obviously (I might hope) unscientific tool in the form of TweetPsych, condemned by pretty much every major psychology blogger I know, but could it expand into actual doctors making semi-official “diagnoses” via social media?

But this is not what Dr. Bakker did. He did not actually “diagnose” Scheringa medically. Rather, he commented on his behavior, in not so nuanced terms: he said that Scheringa is a “bastard who presents himself as victim” and “he gives himself the role of an underdog or calimero”. These are opinions I think quite a few people hold – I, for one, do not -, and no-one would criticize them for saying so on TV. But then again, no-one would be asking them for their opinion, acknowledging that they’re a well-known psychiatrist. If Bakker were interviewed as a random passer-by in a street poll, I assume no professional organization would’ve complained. The problem is, I guess, that the association fears that Bakker’s opinion is taken as an expert judgment that is supposedly based on scientific knowledge of human behavior. This is, of course, not the case: Bakker may not be using pseudoscientific psychology dictionaries to place Scheringa’s behavior, like TweetPsych does with your tweets, but he isn’t using scientifically-sound methods, either. I can see that it harms the profession of psychiatry if people erroneously believe that he “must know”, since he’s a psychiatrist. Now people will get that belief anyway even if he speaks up at a party – and I might hope that isn’t the association’s business -, but at least he then wouldn’t be reinforcing it in mass media.

The World of Employability vs. the World of Institutionalization

I talked with my sister on the phone for two hours a few days ago, and was frustrated when we hung up. The factual reason was that she kept making suggestions that were totally off-base about what might and might not work in improving my situation on the ward. She knows very little about autism, and what she knows, she got from chick mags. Trying to educate her is pretty difficult, since you don’t explain the nuances of autism symptoms and treatments (one topic we discussed was whether meds would help me re the meltdowns) in a phone conversation. Mind you, she was well-meaning, and the fact that we conversed for two hours, indicates that we get along quite well. I don’t intend this post as a sister-bashing rant, anyway.

What I do want to write about, is the totally different expeirences that I have from my sister, but also my boyfriend and everyone else outside of the institution I know. Most people I know offline outside of the hospital, are of college age like me. Everyone who falls within that age group, actually attends college. Now I attend some Open University courses – I just signed up to take a neuropsychology exam -, but it is not with the purpose anyone I know has with being in college, ie. pursuing a career.

My sister talks about her difficulties at university quite frequently. She is a biology major, but not sure if she will continue in this field, since she is very behind in her studies. She talks about possibly switching to history. She asks me about college programs that suit her interest, where she would know what she’ll become, because these might be more motivating to her, but then she tells me that she can’t go to a lower level college because that wouldn’t be “normal” for her. She asks me whether she can ever get into research if she by now is so behind – even if she eventually catches up, people will wonder why she took three years to earn her foundation (first-year certificate). She is concerned that future employers won’t hire her because she never had a part-time job while in college. I tell her that volunteering as treasurer for the Dutch Youth Association for the Study of Nature (plus a dozen other positions at the local or work group level) is relevant experience, but really, I have no clue. Maybe my well-meaning advice sounds as off-base to her as hers is to me, but at least she is the one starting the conversation.

I have the same experiences with other college-attending people I know, as well as on forums like Wrong Planet: I still post on the school and college board sometimes, and even occasionally on the work and finding a job board, but I realize that my experiences are likely irrelevant. Not only did they take place several years ago, but I also can’t be sure whether anything I share may just be related to something I don’t have in common with the person I’m conversing with.

For example, my sister worries about never getting a job and having to be financially dependent on her boyfriend when they’ll live together someday. I won’t likely get into any financial trouble, whether I ever get a job or not: I’m on disability and, unless the law changes again (but the change scheduled for 2010, will not apply to current disability recipients unless they themsleves choose so – the new law is marketed as giving people better opportunities for work), it’s unlikely that I will ever be forced to get a job if my current situation doesn’t improve significantly. On the other hand, I worry sometimes that my current situation will spiral down into a life of total unproductivity, not even solely with regard to paid employment, but also with regard to education and community service. There is no doubt that environmental groups will want my sister as a volunteer, even if she weren’t qualified for a paid job. Of course, I am not saying that the worry about getting a paid job, isn’t important – it is a reality that, without a paid job, my college-age relatives will be financially dependent on others -, but it’s just, well, different.

Another thing is, all my college-age relatives are busy planning out the rest of their lives. They worry that they, in their first year of college, don’t know what they want to do for a profession. I never thought about this even when I was in college: all I thought abotu, was how to get myself through the first year at Saxion, and through the first six teeks at Radboud. At this point, employment isn’t on my mind really, and actually, neither is college: when people ask me where I want to be in so many years, I usually reply: “Out of the institution.” I do still have some college dreams, but they are so vague that they never make it into anything remotely like a future plan.

Now I do still discuss college and employment with people. It’s a lot more interesting than my day activities. When someone asks whether I have a day program, I obligatorily sum up my weekly activities: movement therapy, domestic meeting and singing on Monday, a meeting with the social worker and yoga on Tuesday, movement therapy and orientation & mobility on Wednesday, nothing on Thursday or Friday (but I often go places with my boyfriend on Fridays), and mostly a biweekly meeting with the psychologist not on a fixed time. You ask whether I see any results or what goal these treatments have? No clue, and I’d have to look in my treatment plan for the official gibberish. If you can’t discuss something “normal” about my life like the city I last visited with my boyfriend (the topic I usually start phone conversations off with), discuss your college or employment issues, please. The fact that you are in college, doesn’t alienate me by definition – unless you tell me that my comments are clueless, theoretical and outdated, but no-one tells me so. The fact that I’m in an institution, does.