Wednesday, February 25, 2009

Person Centered Planning (*Long Post Alert*)

Morning, last night I attended a talk in Saint John of God Carmona on PCP or Person Centered Planning. The speaker was Ray Murray (Research Associate, National Institute for Intellectual Disability, Trinity College and Disability Consultant) who himself has a granddaughter with an intellectual disability.

There was a huge amount of information

What is PCP?
Basically PCP = planning. The objective is a 'positive desirable future' for your son or daughter. Key to this is having a foundation of total unconditional respect for the person. Take their opinions as to what they want. Create a plan with goals starting with the end goal in mind. This then gives a sense of control and responsibility to all involved and a clear sense of direction. Ray referenced how much like anything in life we are all better off when we plan and set goals (as long as we dont shelve the plan and dont follow it).

Some key points:-
  • This is not a one size fits all approach to people with special needs in a community rather it is a bespoke tailored service for each individual.
  • This plan is created by a circle of people, that is, parents, services, experts etc. Parents in some instances have opted to not be involved in the planning but rather observe.
  • Parents often know more in relation to their own child and therefore have invaluable input.
  • To implement PCP Services will need to change.
It is worth pointing out at this point that while some services do a variation of this kind of planning many apparently do not.

Case Study

To put PCP is context there was an extremely interesting case study, that of David in Galway. Ray became an advocate for this PCP trial whereby a plan was created specifically for David. He now lives near his parents in his own home and is visited by 3 part time care workers as well of course as by his parents. This has made a huge difference and all parties are much happier as they follow and refine the plan.

UK Leads the Way
Whilst this concept originated in the USA the UK is leading the way. Ray specifically mentioned the "Putting People First" Whitepaper.

In Conclusion
Ray hopes we will follow the UK. He sees PCP as the way forward. He said parents should be policital and fight for what they want.

Prior to the talk I spoke to a lovely woman with a 15 year old son with DS. She gave me some sage advice which I took on board and found resonated during Ray's talk.

She told me keep your child in mainstream as long as you can. Make sure you trust your own instincts as the experts dont know your child as well as you do. Her child was moved out of mainstream too early and she had to fight to get him back in. She concluded that keep your child integrating as much as possible as when your child is happy they will learn more. When her sons desires were ignored the morale fell and he stopped trying....

Wednesday, February 18, 2009

Lamh Reply

Ok so I have sent a brief reply to Lamh as below. Having reflected on this:-
  • I believe Lamh should be open-source
  • I believe I was not given an opportunity to meet with them and explain what I had in mind
  • I dont believe the Lamh A Long is what people are looking for
Anyway I will continue to watch out for this DVD and am also trying a different inroad.....

I am delighted to hear a DVD is planned for this year. All the parents I have spoken with are looking forward to ordering what we hope will be a high quality product this Summer. Can you confirm the actual date when we can place an order?

I would respectfully disagree that “the development of the type I described” would not “fulfill training needs” as I believe that without having actually met you and discussed my proposal in detail that you could actually understand it? I would add that a voluntary organization such as yourselves should welcome input and services from parents such as myself with resources.

In any event roll on the Summer and the Lamh DVD, I will be delighted to see the “Lamh-a-Song” DVD.

Thursday, February 12, 2009

Lamh - The Response? "We are already doing it"

Just to summarize I first contacted Lamh back in mid Oct 2008. I later suggested the DVD middle of January 2009 and had frequent communications from their Development and Liason Officer since.

It was argued for example that "Manual sign training is most effective when it is delivered face-to-face." Also when I mentioned people on the DS forums who had no access to training I was told "this issue can be answered by the Contract Training system, started in 2006, whereby groups of families can contract in a tutor themselves, so please pass on this information if required"

I got a response today. They are doing it already but it was a secret! Hmmmmmm.....

I would love to hear your comments on this and will draft my own response (to Lamh) in the coming days.

Please note the following before you read this and the section I have highlighted in bold below.

Kate08 from the DS Forums posted on this thread 22 Jan that "It's a great idea and I hope Lámh will go ahead with the DVD at last . I emailed the Lámh office almost five years ago about this , and was told that there were plans afoot to make a " Lámh Along " DVD of nursery rhymes with signs"

So five years later here is what just I got back from them today:-

9th February 2009

Dear Dave,

I’m responding to you on behalf of the Lámh Board of Directors. The Board would like to sincerely thank you for your letter and interest.

As mentioned previously in emails, Lámh identifies development goals for a period of time ahead, and several projects have already been planned long in advance. As you will see below, a DVD project is already planned for this year. A development of the type you described was previously undertaken and turned out to be a huge project that didn’t fulfil sign training needs. Hopefully the project Lámh has planned will be of great interest to you and the families you have been in contact with.

The project planned is a DVD of nursery rhymes/songs with signs, for young children who are using Lámh, so it’s very exciting! Lámh wasn’t in a position to make an announcement until the project was confirmed. The production has already begun. The DVD will be called ‘Lámh-a-song’ and the aim is that it will be available this summer. A huge amount of preparation has gone into this project already.

As discussed in previous emails, the teaching of signs in a face-to-face setting is highly valued, as is the opportunity that the Family Course gives to families to seek advice and support from both Tutors and other families. As you will know, the Lámh Family course is attended by families of children with different communication needs and it’s designed to provide the space for different issues and strategies to be discussed. As training is highly valued, recent developments have included:

§ Training 26 new Lámh Tutors from healthcare/education backgrounds;

§ Setting up a Contract Training system whereby groups or services can contract in a Lámh Tutor themselves to run training;

§ Piloting a new Training for Trainers course so that healthcare/education professionals can train as Family Course trainers in addition to the Tutor Training structure, thus increasing the amount of Family Course Trainers available.

Another development planned for this year is a review of vocabulary for families, looking at different age groups of Lámh users. This too is a very welcome development and will involve consultation with Lámh users and their families, teachers, speech therapists, Lámh Tutors and others.

Lámh would like to thank you again for your interest, to assure you that your proposal will be kept on file and we would hope to contact you again in the future in regard to this.

Kind regards,