What are they trying to do to us?

Some thoughts on New Directions, the Assisted Decision Making (Capacity) Act and more 

Perhaps you are wondering what on earth I am on about? So here's a couple of definitions:

New Directions is the latest disability-related policy from the Irish Health Service (HSE). My understanding is that it was introduced to address all the scandals of poor care in residential homes for adults with disabilities. The idea being to move all those affected back into smaller homes in the community.

Now the policy has been extended to adult day centres, which are provided for those adults for whom paid work is not possible due to the severity of their disabilities. They are now to be based 'in the community' too.

The Assisted Decision Making (Capacity) Act will enable people with disabilities to make decisions about their own lives with as much help as they need to do that.

Both of these new initiatives are likely to transform the lives of those with physical, sensory and mild intellectual disabilities, but it seems from reading the documents that people with severe, profound and complex issues were barely considered at all.

I fear that these proposals will diminish the lives of people like my daughter, because the community cannot cater for them, and because the huge additional workload on carers will mean that parents will be able to spend even less time with their adult children, and ultimately will not be able to cope with the additional stress and pressure. Back to residential again.

And just to say it again: I want my daughter to live at home with me for the rest of my life. But we need support, I can't do this on my own. What we DON'T NEED are policies imposed by people in ivory towers who know nothing about how we live our lives on a daily basis. We need supports that work for us. We need to be treated as individuals.

In some ways the whole basis of New Directions policy is questionable. If my daughter did not have disabilities she wouldn't be 'based in the community'. She would be at College or heading into the city to work. There's nothing normal or natural about this policy and they will be putting people like my daughter into a community that mostly consists of the very old, the very young and those who are not in the paid workforce. A community that is not ready or very interested in her, and certainly doesn't have the facilities to cater for her needs.

The policy refers to new 'service locations' in the community to cater for a maximum of 25 people. I understand that they will be a hub for local adults where they can meet and socialise (which is good) and from where they will access community facilities. There is no mention of changing places or any of the activities that Smiley has enjoyed at school and her current two year adult programme. Such as:

Participating in drama.
Swimming in an accessible pool.
The opportunity and space to practise using a walker again .
Participating in dance.
Music therapy.
Sensory Room.
Lively atmosphere.
Easy access to equipment repair workshops.
Easy access to therapies.
Enough staff so my daughter can access such activities (two would be needed for many of them).

Apparently New Directions "envisages all the supports available in communities will be mobilised so that people with disabilities have the widest choice and options about how to live their lives and how to spend their time"

Except that they won't have the choice to attend a large centre with lots of facilities and services where they can mix with a wide variety of other adults, both their age and older..

More than that, the meetings I'm having about implementing New Directions for my daughter are mostly talking about bringing her to local coffee shops, which gives me a sinking feeling inside. Is that all? It's about her being based at home, and probably using the toilet at home too. This does not fill me with confidence that her life will get better. A few outings a week at different times? Where's the joy and excitement in that?

Then there's austerity. It hasn't gone away, you know. Next time the Government wants to make cuts, it will be easy for them to shave an hour off community support here and there. They've done it with home help. It's out of sight, so no-one is going to make much fuss. Just look at the lack of reaction from the wider community to all the disability cuts in the UK.

The mad thing is that right now everything is predictable and working for both of us.

Smiley has friends with a variety of disabilities - they get a sense of responsibility from helping her and they enjoy each other's company and she engages with them, even though she has no clear words.

She has a great programme of activities that she enjoys, and is slowly learning more skills.

She gives the bus driver a big smile almost every morning when he arrives to bring her to the centre.

So why is the State trying to fix something that isn't broken?

From my own selfish perspective I think that New Directions will be a disaster. I will not have a clear space during the day to get other things done. Even if I don't have to stay at home, I presume I won't be able to venture far. If she needs the toilet, I'm going to have to rush home pretty quickly. But what if I'm at the dentist with a tooth half drilled? Or sedated before yet another scope. Or at the hairdresser with my hair half cut. Actually how will I manage medical appointments at all? And there's another thing. I was hoping to go back to work at some point, perhaps after my son has finished his Leaving Cert. If I have to be based at home to support my daughter, I've no hope of ever achieving that dream. And of course society and the media will feel entitled to call me a scrounger as a result.

Then there the new Assisted Decision Making (Capacity) Act, which sounds wonderful for young adults with mild intellectual disabilities who will be enabled to make choices about their lives.

My daughter may be an adult in years, but intellectually she is still a young child, and needs to be guided and parented. And yes she can make simple choices, even about her daily activities, but would any responsible adult really let her spend her days eating chocolate muffins in coffee shops? No, I thought not.

Yet this Act will wrap any decisions I need or want to make for my daughter in layers of bureaucracy as far as I can tell. And instead of spending time with her doing things she enjoys, I will be spending time in meetings, in court and doing mountains of paperwork, just to be allowed to continue doing the things with her that I do now. This sounds like madness to me. And it can very time-consuming and frustrating.

For those with severe and profound disabilities the Act sets up a structure for 'decision-making representatives'. You have to go to court to become one, get court approval for various actions, and report back as well. The following is taken from the Act:

"Reports by decision-making representative
46. (1) Subject to subsection (2), a decision-making representative shall, within 12 months after the making of the decision-making representation order appointing him or her, and thereafter at intervals of not more than 12 months, prepare and submit to the Director a report in writing as to the performance of his or her functions as such decision-making representative during the relevant period.
(2) The court may direct that a report be submitted to the Director within such shorter period or within such shorter intervals than those specified in subsection (1).
(3) Every such report submitted to the Director shall be in such form as may be prescribed by regulations made by the Minister and shall include details of all transactions relating to the relevant person’s finances which are within the scope of the decision-making representation order and details of all costs, expenses and remuneration claimed by or paid to the decision-making representative during the relevant period." 

It might shock you to know that I resent this paragraph. I resent all the additional workload that it implies. I resent that while I was trusted to raise my daughter and spend her domiciliary care allowance as I saw fit, I am no longer trusted with her money now that she is 18. Instead I am treated with suspicion as someone who may no longer know what is best for her. What else will I be accused of?

A lot, judging by what happens to some parents in the UK.

Perhaps I'm getting paranoid, but other policy proposals also seemed to target special needs families: such as linking child benefit to school absence, or requiring parents to do all therapy (many of us did a huge amount of therapy with our children). But that should be out of choice, some can't as they have no spare time. This move implies blaming parents if their child doesn't make progress. And I'm surprised that therapists who presumably trained to work with children, are happy to be training their parents instead. Then there's the threatened prosecution of tired drivers. Special needs parents are ALWAYS tired. They also tend to spend a lot of time in the car driving their offspring to therapy and appointments, so how is that going to work?

I'm already on pills for stress that has mostly been caused by trying to get services from the State for special needs and autism. I can't take much more, and if I get really sick, the State will have two teenagers with complex needs to care for. Can you imagine the effect on my children if that happens?

The more burdens you lay on carers the less time and energy they have to care. So who loses out? Our children. And I don't think that's right.

In the rush for political correctness most of this seems to have been forgotten by Governments and some disability advocates and organisations too. I hope I'm wrong, but anecdotal reports from families caught up in these policies suggests I'm not.

We love our kids, but we're only human, we're getting older, we have less energy, perhaps fewer resources, our parents who helped out when the children were young, may now be infirm or gone.

And when I look at my daughter and look back at the happy life that I have created for her so far, I really do wonder what they are trying to do to us.







4 comments:

  1. 'Care in the community' was always a phrase that put the fear of God in me, when dealing with mental health issues in my family in the past. Way in the past. This is not new but seems to be a rolled out and expanded version? One size does NOT fit all, especially in the area of disabilities and support for families to cope when services are 'reduced' (that is how I have always viewed it) must be taken into account. This New Directions needs serious debate and consultation with service users AND THEIR FAMILIES.
    I hope this excellent article is read far and wide...... xx

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  2. At last someone who feels as I do. I have felt like a lone voice raising these concerns about Big Brother intruding in our family life with Inclusion Ireland and the Centre for Disability Studies at NUG who have been promoting these initiatives. 99% of families are totally unaware of the implications of decisions being made about their lives.

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    Replies
    1. The reaction to this post shows that you are not alone. I suspect that the organisations that you mention feel they have to promote these initiatives because it is politically correct to do so, but also because they will and are transforming the lives of a certain segment of the disability population.

      But once again there should not be a one size fits all policy *sigh*

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