Tag Archives: Long-Term Care

Disability Services and Moving: Long-Term Care and Community Support #AtoZChallenge

Welcome to my letter D post in the #AtoZChallege of random reflections. For today, I have chosen to give a brief introduction to disability services in the Netherlands. This might be a boring topic, but it is currently on my mind.

You see, though several years ago I planned on living in our house in the tiny village for the rest of my life, this is unlikely to happen. My husband has been talkig about moving for almost the entire time I’ve lived with him. For a long while, I decided that we’d have to stay local, as in, within Bronckhorst municipality. The reason for this is my disability. Let me explain.

There are basically two categories of care people with disabilities can get. One is through the Long-Term Care Act. This is a national bill that governs 24-hour residential care. In order to be eligible for Long-Term Care Act funding, you’ll have to need 24-hour care for the rest of your life because of a physical, intellectual or sensory disability or a somamtic or psychogeriatric illness. Mental illness, in other words, is not a ground for this type of funding even if you need 24-hour care and are likely to need it for life.

The other type of care is Community Support Act care. The Community Support Act allows local authorities to decide on care for anyone who needs it but doesn’t qualify for Long-Term Care Act funding. As such, anyone who needs 24-hour care for a while, or who needs less than 24-hour care, or who needs care due to a mental illness, will fall at the mercy of the local authority.

I fall under the Community Support Act. As such, the social consultants in Bronckhorst decide on my care or lack thereof. Bronckhorst or my social consultant in particular has been really easy-going with providing care funding. Should my husband and I move to another municipality, we’re at the mercy of that area’s local authority. This is the reason that I decided we shouldn’t ever be moving out of area.

Because the housing market is really tight in Bronckhorst and there’s nothing within our budget, we’re exploring options for moving out of area anyway. I hear very mixed stories about whether this could be worth the risk.

In Between: Walking the Disability Line

This week, the prompt from mumturnedmom is “in between”. I immediately thought of my life as a disabled person. For many years, I’ve thought of it metaphorically as me walking a line between being good enough to be included in the non-disabled world and bad enough to deserve care.

I am multiply-disabled. I reside in an institution with 24-hour care. I am not even in the lowest care category for institutionalized people now that we’ve faced massive budget cuts and the lower care categories got deinstitutionalized.

Yet I am intellectually capable. I am stable enough not to need to be on a locked unit, and in fact am going to leave the institution in a few months. I will then fall in a lower care category, be entitled to less care. Yet I will be able to live a more normal life with my husband.

People often automatically assume that, if you have certain abilities, you are automatically less disabled than if you don’t have these abilities. For instance, I am always seen as “high-functioning” autistic because of my IQ. This is despite the fact that I’m in a similar care category to someone with an intellectual disability who has fewer behavioral challenges, sensory issues, or is more capable in daily living tasks than me.

People also often automatically assume that deinstitutionalization is appropriate only for those with few care needs, those who are “high-functioning” if you will. People don’t take into account that institutional life requires consumers to live in a group setting, which may not be possible for some.

I struggle with this view of disability as a continuum at best and a dichotomy at worst. It makes me walk the line between “high-functioning” and “low-functioning”, when in truth, I’m neither and I’m both and I’m in between.

I am “high-functioning” because of my IQ and my language skills. I am “low-functioning” because of my poor daily living skills. In most ways, however, I’m neither and I’m both and I’m in between depending on circumstances both within myself and in the environment. Yet I’m forced to choose.

And I refuse to choose. I want to be accepted as a human being with her own set of capabilities and difficulties. I refuse to choose between being “high-functioning” and being “low-functioning”, between being dependent and independent. After all, I am interdependent, like veryone else.

mumturnedmom

L – #AtoZChallenge on Mental Health

Hi and welcome to the letter L post in the #AtoZChallenge on mental health. I did not have the energy to schedule this post in advance, because I was extremely tired over th =e past few days. Sorry for that. Here goes.

Lethargy

This is quite a suitable word for today. Lethargy means being overly tired and also often being unresponsive, not very alert. Lethargy can be both a side effect of sychiatric medication and a symptom of psychotic disorders, although in that case it usually presents differently.

Loneliness

Loneliness and aloneness are pretty common among psychiatric patients. Some people’s mental illness causes them to self-isolate, while other people suffer from being isolated from others. To combat loneliness, many support organizations for people with mental illness have buddy programs that pair a client with a volunteer.

Long-Term Care

Many people with severe mental illness need care throughout their lives. Outpatient care, even if it’s for life, is covered through health insurance or community assistance. There are strict limitations on outpatient care and people need to be re-assessed regularly. In the Netherlands, the Long-Term Care Act only covers long-term inpatient treatment for the mentally ill and institutionalization or supported housing for people with other severe disabilities. People with mental illness who lived in supported housing when the Long-Term Care Act went into effect in 2015, have five years of transitional rights to supported housing care, after which they need to get re-assessed. They may then get approved for care through the Long-Term Care Act, which is essentially for life. People with other disabilities who lived in institutions or supported hosuign by 2015, got approved for the Long-Term Care Act automatically.

In the original draft of the Long-Term Care Act, people with psychiatric disorders were ineligible for long-term, institutional care. Eventually, they are now eligible only if they’ve been in inpatient mental health treatment for at least three years. I wonder what this means if I fail at living with my husband, since I have been an institution patient for over three years but didn’t apply for LOng-Term Care Act funding right away.

C – #AtoZChallenge on Mental Health

Welcome to the #AtoZChallenge on mental health, letter C. Today, I have quite a few words to discuss with you.

Care Plan

When I first entered the world of care, I didn’t have a care plan. They were just starting this up at the blindness rehabilitation center and I was among the last who didn’t have one. I hated it, because I thought a care plan meant I’d actually get better care. That’s the idea. It doesn’t work that way in real care.

Care plans in mental health are part of treatment plans but not the same. They list the patient’s goals for a particular time period, the help a patient will get and the risks if the patient doesn’t get that help. Care plans are framed in a very rigid format. As such, they cannot accommodate all the varied problem areas a mental patient might experience. The care plan also needs to conform to one’s care package, which is the amount of funding allocated to a patient’s care. Then again, care plans are also used to justify funding. If this isn’t a circular argument, I don’t know what is.

Caseload

A treatment or care provider’s caseload is the number of patients assigned to them. In intensive outpatinet care, one professional might have a caseload of ten patients. Usually, their caseload is much larger. Caseloads are related to how much care a person is allocated again. For instance, as a person in my care package category, I’m only allocated 50 minutes of “treatment” a week. This includes psychotherapy or counseling, social work, medication management, etc.

Comorbidity

This is the co-existence of two or more mental illnesses in one person. Many people in long-term psychiatric care have more than one diagnosis. Interestingly, a “dual diagnosis” refers specifically to a mental illness and an addiction co-existing.

Control

I once read a list of things typical to institution life, and at the end, the list went: control, control, control. Even though the philosophy of mental institutions has changed over the past several decades to “allow” patients more independence and to rehabilitate us, this has become its own framework of control. I have had many battles with nurses who said that, because this is a treatment unit, I should be able to do daily activities independently, despite the fact that I can’t do most of these.

Out of My Head, Out of My Reach

I have been feeling a lack of motivation for blogging lately, especially in English. I blame, in part, the restart (again) of my Dutch blog, but I also blame the fact that just too much is going on in my mind that I don’t know how to put into words on paper (or on the computer screen, of course). Today, I got myself yet a couple more journaling guides, and one of them is 53 Weekly Writing Retreats by Mari L. McCarthy. I subscribe to her newsletter and have been thinking of joining one of her journaling courses, but I never followed through.

The first journaling exercise in this 53 weekly retreats thingy is called “Goin’ Outta My Head”. It asks you to write what’s on your mind. This may not exactly turn into a blog post that’s going to go viral (not that any of my blog posts will ever go viral, ha), but I don’t care. Here goes.

I’m having huge difficulty imagining I’ll ever be ready for life with my husband. My husband wants me to practise coming to our home on a MOnday or Friday (so after or before the week-end we’ll spend together) to practise time alone where I can’t reach out for support. He wants me to use my limited accessible long-distance transportation for this. The tiny village is not in the same short-distance transportation area as the institution, so I can’t use the virtually unlimited regional accessible transportation service. Not that I have a regional accessible transportation pass yet. Anyway, it sounds logical that I’d use my limited transportation for rehabilitation rather than socialization. Or not. I am supposed to visit a friend at the other end of the country on Thursday, but the bidirectional journey costs me about half my allocated transportation kilometers. I’ve now setteld on going part-way by accessible transportation and part-way by train, thanks to a great service that allows consumers to combine accessible transportation with guided public transportation.

However, I’m completely overwhelmed by the whole idea of having to live with my husband in four months. He works full-time. We live in a tiny village where the nearest support agency is almost 20km away. We don’t have a clue whether I can get on-call support at all. We don’t even have a clue where to ask these things, and yet, because we moved out of area, social work isn’t going to help us. And because it might slow down my rehabilitation process, the professionals in control won’t let me go to an institution that is within our area.

I like our new house far better than the old one and, besides, it’s where my husband feels at home. I have never had a place where I felt at home at all, and I don’t want to make my husband feel out of place. The care in our old town isn’t great either. Besides, there’s just no going back. I agreed to move to the tiny village and we’ll have to deal with it.

However, because the powers-that-be take no responsibility for getting me proper care but are refusing to let me go to an institution that will, I feel like all responsibility rests upon my shoulders but I have zero control. I got this whole ball rolling with my comment, over a year ago, that I want to go live with my husband, yet now the ball is completely out of my reach.

Fear of Joy

Fear of joy. Some people find this hard to imagine, but it is real for some of us who’ve experienced depressive symptoms. It is real for me.

I have a really hard time experiencing joy without sabotaging it with fear. I don’t deliberately do this, but quite often I tend to feel intense anxiety when I notice I am in a good mood. Then obviously my mood goes down again.

It’s probably because of expectations. There is this man on my unit who always says he’s doing so-so or bad and never says he’s doing well. He says it is because, if he says he’s doing well, they’ll think he’s no longer mentally unwell and will expect him to leave the psychiatric unit. I can relate to this. Now I myself don’t want to be on this unit forever, like this man does. What I can relate to is the expectation that, if I’m well once, I should be able to keep the feeling and not fall unwell again. Worse yet, I fear that if I say I’m feeling well, I will be expected to cope with less support, more independence. In this sense, I can relate to the fear of being kicked off the unit if I say i’m well. Though I don’t want to stay on this unit forever, I do want to maintain a certain level of support.

Of course, everyone, whether we’re mentally ill or not, experiences highs and lows. People who aren’t mentally ill aren’t expected to keep feeling well forever if they say they’re well once. Why should people with mental illness be expected to be cured if we say we feel well once, then? The truth is, no good mental health professional or understanding relative expects this out of us.

Of course, I remember the situation a few years ago where a woman with depression was denied sick leave benefits because she “didn’t look depressed” in Facebook photos. That sort of thing may happen, and I’m sometimes afraid of this too. Like, yesterday I told my named nurse I’m afraid of not getting community support once I live with my husband. The reason is my staff aren’t coming to the tiny village to assist me with my application and the social consultant there isn’t coming to my institution. This means I’ll need to file the application all by myself. Of course, my husband will be there, but I doubt he knows what care I’ll need. Now I’m at once afraid that I’ll not be able to clarify what I need so that the consultant won’t be able to get me care, and that I sound too capable. The care needs paperwork that the Center for Consultation and Expertise created for me in 2013 lists my intellectual giftedness. I’m tempted to delete that in the process of updating it for the current application. The first reason is because I have no clue what significance a high IQ has over a normal IQ when applying for care. I mean, it means I can’t get care from the intellectual disability agencies, but I couldn’t if I had a normal IQ either. However, the other reason is I fear it will be seen as significant by the social consultant and they’ll determine that if I’m so intelligent, I should be able to solve my own problems.

This is what’s behind my fear of coming across like I’m doing well, and consequently my fear of experiencing joy. Of course, like I said, every understanding person should realize that having a good day doesn’t mean being cured of your mental illness. Then again, I’m not sure most people are all that understanding. Could be my stress-related paranoia though.

Mental Health Care in the Netherlands #Write31Days

31 Days of Mental Health

My husband and I have been in the process of a possible move for a few weeks. In fact, we’ve been contemplating moving for months. Last week, however, my husband informed me we’re high on the housing corporation’s list for a house in a tiny village on the “right” side of Arnhem (that is, east from it of course). My husband has been wanting to move back to that area ever since we moved into our current apartment in 2012. Today, we got the housing corporation’s green light for a visitation, at which point we can decide whether we want the house or not. With the possible move coming so close, my husband started worrying about the possibility of me getting home care in a tiny, rural village. This gets me to today’s topic in the #Write31Days challenge on mental health: the mental health care system in the Netherlands. I will focus on adult care, because it’s complicated enough without adding in the Youth Act and what not.

There are basically three laws governing mental health care in the Netherlands. First is the Long-Term Care Act. The Long-Term Care Act covers institutional care that is essentially deemed lifelong. Examples are nursing homes, group homes for people with developmental or physical disabilities, or psychiatric supported housing placements. Originally, all people requiring long-term, institutional care because of a disability or illness were covered, except for those with psychiatric illnesses. Apparently, the government thought that a psychiatric illness cannot possibly be lifelong. Before the Act took effect, however, this problem was solved. Now, if a mentally ill person has been in inpatient treatment for three consecutive years, they may qualify for institutional care through the Long-Term Care Act. I have yet to find out whether, should I fall apart while living with my husband and need to be institutionalized, I’ll first need three more years of inpatient treatment before I can go into supported housing. After all, I already got those three years of treatment.

Next is the Health Insurance Act. Health insurance is mandatory in the Netherlands and, though insurance companies are private, they cannot turn anyone down for the “basic package”. Basic health insurance covers GP visits, care by medical specialists, most medications, hospitalization, and other care deemed necessary. Outpatient mental health care, partial hospitalization and the first three years of inpatient mental health treatment are covered by basic health insurance. So are most but not all psychiatric medications. For instance, benzodiazepines are not covered except if the patient requires “high doses” of them because of “severe mental illness” (or some other, non-psychiatric indications). I assume they essentially mean that it’s okay as long as the patient needs chemical restraint.

The final law covering mental health is the Community Assistance Act. This law is implemented by each local government, so each locality gets to decide which people qualify for funding for care. They also decide whether people have to pay a copay. The Community Assistance Act covers housekeeping services, day activities and independent living support, as well as short-term institutional care and respite care. I will need day activities and most importantly independent living support through the Community Assistance Act. Whether you get care and, if so, how much is determined through a “kitchen table meeting” with a “social consultant”. Family members are supposed to sit at the kitchen table too, because they too are expected to fulfill some care duties for their disabled or ill loved one. I’ve heard crazy examples where children are required to do housework because their parent is disabled. I don’t object to chores, but the local government shouldn’t assign them in my opinion.

It is the Community Assistance Act that is worrying me and my husband most in preparation for the possible move. I mean, my health insurance won’t change but my local government will. I trusted the social consultant with the local government in our current town, which happens to be in the same municipality as the institution. That will change if we move to the tiny village, because I’ll stay in my current institution whilst preparing for home support. Not that there is an institution in the tiny village municipality anyway. What this means is, my social worker, my husban and I will have to negotiate with a social consultant who isn’t familiar with my current care situation. Besides, like I said, I trust my current social consultant and you never know who you’ll be stuck with next. Of course, my current social consultant hasn’t made any final decisions yet, so that could be a disappointment too. I E-mailed my social worker asking her to get an idea of care in the municipality we may be moving to. I did a quick read of the municpality website and found out they mention the tiny village in their allocation of social consultants, so I assume this means there must be possibilities.

“You Can’t Be in Society Like This.” #BADD2015

Today, May 1, is Blogging Against Disablism Day. I have been participating in this yearly event almost every year since 2007, though some of my posts are no longer online. Usually, I had a good idea of what I was going to write about well in advance. Not now. Having been busy with the #AtoZChallenge until yesterday, I didn’t have lots of time to think up a theme.

I am therefore going to start by giving a little background on my situation and will see where this goes. I am institutionalized and have been since 2007. I was living on my own in 2007 when I broke down mentally and had to be taken to the psychiatric hospital. Though the psychiatrist who admitted me did say we would need to find me a suited supported housing accommodation, she probably wouldn’t have predicted this to take long, let alone as long as it did and does take.

One problem which I encountered was that the staff who had been supporting me while living independently, particularly the team manager, were unwilling to have me go into supported housing at their organization. Their reason was the fact that I had meltdowns. Though I did not become physically aggressive towards people, I did scream and occasionally throw objects. The team manager at one point said: “You can”t be in society like this.”

Well, let me focus on this for my #BADD2015 post. You can’t be in society like this. What? You can’t be in society like this.

I am an informal patient. Always have been. With one exception during those early months on the accute ward, no-one has ever threatened involuntary commitment. There just wasn’t enough ground for it. Yet I couldn’t leave the institution because the supported housing agency decided that “you can’t be like this in society”.

I have become much more moderate on institutionalization over the years. I used to be firmly anti-institutionalization. Not anymore. It’s probably because I just don’t have the spoons to fight a system that won’t change for the better, and that is in fact moving towards more institutionalizations for severely disabled people.

The Long-Term Care Act, which regulates 24-hour care for the most vulnerable of disabled people (which for now includes me), says that people need to get care in an institution. There are exceptions, where a person can get the “full package at home”, but there are very strict guidelines for this.

I have always promoted good, community-based care. All the while, I’m still institutionalized, and I’ve become weary of advocating for my right to live in the community. After all, if no agency wants to support me, I’ll need plenty of spoons to fight them.

What annoys me more than people’s refusal to provide me with care, is the general idea behind the comment that you can’t be in society like this. I mean, it’s still discrimination if a care provider refuses a client who isn’t violent towards them, but it is less striking than to say that this person can’t be in society like this at all. This is like saying that this person is an outlaw.

The bottom line is no care provider has been found yet that is willing to take me on. I just yesterday had a meeting with a local care officer who decides on funding for care under the Community Assistance Act. The meeting went better than I expected. Because I’m now married, I’m planning on living with my husband rather than in supported housing. Then again, this team manager led the community care team, albeit in my old city. The blanket statement that you can’t be in society like this, presumably applies to community care too. Let’s just hope that the care agencies in my current town are less ableist.

Long-Term (S)care Planning

Next year, my institution is going to undergo restructuring and all people with the lower levels of care will be kicked out. Lower levels of care in terms of institutional care, that is, so my level five (out of seven) care package does count. Exceptions are being made for those who’ve been completely institutionalized, so that they can’t live in the community, but that doesn’t include me having spent “only” seven years in an institution.

Honestly, I’m worried, but also determined. I was actually going to be referred to the Leo Kanner House workhome. The Leo Kanner House is an agency for autistic children and adults, specifically those without an intellectual disability. The workhome is their institutional, long-term placement for the more severely disabled adults, but firstly they have a waiting list a mile long (or two miles, or three), and secndly, my care package will likely by the time they have a place for me, not qualify me for care there anymore. Five out of seven sounded heavy duty when I first was assigned this care package in 2009, because I got there from three and that was already called something about “intensive support”. Currently, those with any care package below five are expected to live independently with outpatient and home supports. Fine with me, and I would’ve loved to attain this level of independence, but it’s not like the people in these care packages get the additional care that living on yur own requires versus living in a group home or institution.

As far as I’m aware, the people in care package five are allowed 24-hour care until the Long-Trm Care Act passes, which is only God knows when. 24-hour care, for clarity’s sake, means having someone available on call or at best in the group home or on the ward 24/7. There’s absolutely no-one who is allowed 24-hour supervision under the Dutch care system. Anyway, assuming that I’m entitled to group home care until whenever, but will be kicked out of the institution next year, I decided to E-mail my therapist to discuss referring me to supported housing.

There are two supported housing agencies in the area that cater to psychiatric patients – and autistics without an intellectual disability fall under the mental health system here. One of the agencies is a larger one which has existed for several decades. On their page about autism care, they only advertise a training home where autistics are trained to live independentlly and have to move out within a year. Not suitable for me, as 1. I already got enough training home experience to know I’m not going to learn much there, and 2. there’s no way I’m going to learn to live with only home supports in a year’s time, if ever. My husband and I are going to E-mail them anyway as, being a larger organization, they might be able to provide some kind of accommodation where we can live together with enough support for me.

The other organization is smaller, having only about six or seven group homes throughout the province, though mostly in my area. They have an autism-specialized group home in the nearest big city, in which they work together with the Leo Kanner House, but there are two drawbacks. Firstly, this group home is located down town, which means I won’t be able to travel safely even for just a walk around the block. The second drawback is that it is part training home too. Then there are two group homes in the countryside near a neighboring town from here. It is one of these group homes I’m asking ot go on the list for if I pass the intake interview. I will be calling this organization tomorrow after I speak to my therapist. Not sure how or when I’ll be contacting the larger supported housing agency.

One of the positives about moving into a group home is that my therapy falls under a different insurance scheme then. Under care packages for those in institutions, you’re only entitled to 50 minutes of “treatment” a week. That’s normal, you’d say. The thing is, “treatment” includes not only psychotherapy, but also art therapy, social work, consultations with a psychiatrist, etc. Basically anything other than staff support and day activities. Based on this, I get psychotherapy only once every other week at best (even though until recently I had no other forms of treatment, but oh well). Under group home care packaging, support will still be covered, but treatment isn’t covered. You’ll have to get that paid for through health insurance. That means, if I’m correct, that you can get more treatment paid for if your diagnosis warrants it, which mine does if I have to believe my therapist, who says that people with borderline personality disorder normally get at least a session a week. (Day activities are from 2015 on covered through the local government to make things complicated, so I have no clue how m uch I can get of those.)

I also asked my therapist to contact the Leo Kanner House about doing a consultation there. In all honesty, I’d like to get therapy there (they offer psychotherapy too) rather than at my local mental health agency, but as far as I know, getting both agencies involved is also possible if you have a dual diagnosis. As I wrote a few weeks ago, however, my diagnosis of autism is being questioned, so I’m asking my therapist to call my old institution to request my old records, too. I don’t mind having to answer a zillion questions about my autism for only about the fourth time (yay, I can do sarcasm, does that make me NT?). What I do mind is having to get my parents to come over again, for the third time in their case, to do the developmental assessment. Oh wait, what if my childhood development has changed since 2007? My therapist had better get the records, and she’ll hopefully straighten up about my blindness, as the Leo Kanner House had a blind client several years ago.

Why I Can’t Live Independently

I was asked the question again, on a Facebook group for parents of bliknd/autistic children (where I share my perspective as a blind/autistic adult). When people realize I’m above-average intelligent and verbal, they often ask why I can’t live independently. That is, unless they, like my therapist, assume that no blind person can. She originally had it written into my treatment plan that, if I had not been blind, I would’ve been able to live independently with outpatient support. I had this removed because it quite likely would’ve impacted my funding.

Honestly, it is quite a painful question for me. I have somewhat suppressed the memories of the time when I did live on my own, and don’t really like to think of that time. Then again, I have to if I want to clarify my support needs.

I couldn’t live on my own back in 2007, when I tried, because I had terrible meltdowns in which I’d become self-injurious and aggressive, and I wandered. I also couldn’t do daily living tasks because I needed very clear instructions and needed lots of one-on-one instruction. I lived in an independence training home prior to this and got lots of instruction there, but I got overwhelmed very easily and had meltdowns etc. then. I was more or less kicked out of the independence training home because of my meltdowns.

In addition, I have mild motor deficits. I don’t know whether this is the cause of my inability to perform simple daily living tasks like putting a topping on my bread, but I can’t do these things. My gross motor skills are better, so I can technically operate a vacuum cleaner for example, but I get overwhelmed by the noise so much that I either forget where I was vacuuming or shut down completely. Vacuuming and sweeping are not the problem, as blind people in the Netherlands generally get fudning for a housekeeper to do these tasks. Unless, that is, you have a partner who is non-disalbed, but then again my husband has to do all the cleaning now that he lives alone, too. Same for cooking, so these are not a problem.

It is really hard to put into words what went wrong when I lived on my own. Yeah, I had meltdowns and wandered, but, as an intelligent person, can’t I just control those behaviors? With medication (including a high dose of an antipsychotic), these behaviors have become less frequent, but other than that, I’ve found nothing that helped me. The meltdowns and wandering still occur regularly enough that it’d be a safety issue if I lived independently again. Besides, the fact that I have 24/7 support available should I need it now likely causes the meltdowns to be less frequent. I have learned to delay my need for assistance, but still ultimately need a good deal of assistance during the day. Besides, in cases of (perceived) emergency, I just need to be able to reach someone. And you might say my perception of emergencies is screwed, but when I’m sensorially and/or cognitively overloaded, I can’t make that judgment. Oh, did I mention I can’t get myself out of my husband’s apartment safely using the stairs, which I’ll need to in emergency cases? I could likely learn this, but I’d need a fair amount of instruction. I do know the stairs and don’t know whether I could walk them without falling if I didn’t get assistance. For those who’ve seen me walk the stairs at home fine, these are firstly different (indoor) stairs, and secondly my motor deficits have gotten slightly worse.

When I write this, I can hear the judgment of certain people, including possibly certain readers, in my mind. Some people may want to minimize my support needs because they are in denial. Others mighht want to discredit my opinions, for I am allegedly not like their child. I was going to write about all the unsafe situations I’ve been in (and not just unsafe as perceived by me) because of lack of support, but I think it’s pointless. It hurts too bad to think of these, and most likely people aren’t going to change their perception of me unless they genuinely want to, in which case the above paragraphs should suffice.