Tag Archives: Housing

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.

“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.