Opportunity to help improve care services for adults with autism

30 Jul

A consultation to help improve care services and healthcare outcomes for adults with autism in England was launched today by Care Services Minister Paul Burstow.

This is the next step to help adults with autism live full and independent lives as equal and included citizens and follows the publication of the strategy for adults with autism: Fulfilling and rewarding lives.

The strategy sets a clear framework for all mainstream public sector services to support adults with autism and is backed up by the Autism Act 2009, the first ever condition specific legislation.

The 12-week consultation process seeks views from those with autism, their families, carers, representative organisations and all sectors of society on a number of important issues such as:

*diagnosis of autism

*increasing awareness of autism amongst frontline staff

*provision of training and specialist training for frontline staff

*appropriate assessment of needs for those with autism

*provision of relevant services for young people and adults with autism

*local leadership for NHS and social care in relation to the provision of services for adults with autism

Care Services Minister Paul Burstow said:

“I hope people will take part in this opportunity to influence the direction and progress of our autism programme.

“It is unacceptable when adults with autism do not get the right care and support they need from health and social care services.

“The Government wants the consultation to reach as many people as possible, in line with our goal of giving people more say in the decisions that affect their lives. These views will help shape our priorities as we seek to help adults with autism live fulfilling and rewarding lives.”

Mark Lever, Chief Executive of the National Autistic Society, said:

“This is the vital next step people with autism and their families have been waiting for. During the passage of the Autism Act, Parliament described this statutory guidance as the ‘teeth’ of the Act, so it is vital that it secures real and lasting change at ground level.

“Now, I’d like to urge as many adults with autism, their parents and carers to take part in the consultation to make sure it is robust and can be used to hold their local services to account. The right support at the right time can make an enormous difference to peoples’ lives.”

The statutory guidance for health and social care will be published by December 2010. The strategy will be reviewed in 2013.

Go to http://www.dh.gov.uk/en/Consultations/Liveconsultations/DH_118058 for info packs.

11 Responses to “Opportunity to help improve care services for adults with autism”

  1. Mike Stanton August 1, 2010 at 09:37 #

    The big problem with any consultation is going to be the implementation. One of the key agencies for delivery of the provisions of the Autism Act was going to be the Primary Care Trusts. And what does this government propose to abolish as part of its reorganization of the health service? Primary Care Trusts!

  2. RAJ August 1, 2010 at 18:30 #

    ‘And what does this government propose to abolish as part of its reorganization of the health service? Primary Care Trusts!’

    Ouch. Same problem in the US. Budget deficits in the federal government and the states and local education districts has already led to budget cuts in special education programs. Lots of feel-good talk by government officials but the rhetoric doesn’t match the reality.

  3. stanley seigler August 2, 2010 at 00:53 #

    [mike stanton say] The big problem with any consultation is going to be the implementation.

    Implementation the problem…the illusion (bureaucratic paperwork, bs) of implementation is also a problem in CA-USA…

    CA dreaming: if existing, feel good, legislation were implemented and funded adequately…a quality life for all would be SOP…

    stanley seigler

  4. Laurentius Rex August 2, 2010 at 19:50 #

    Yes this government are playing silly buggers with the health service (not that any government before them ever has not)

    I can vividly recall all the changes that got us this far, the fund holding GP’s, the primary care groups, and then the primary care trusts.

    It was interesting to attend the AGM of our wannabe foundation trust, and to learn how there (our) bid has got tangled up in the new government’s agenda.

    Originally such things were opt in, but the new proposal is that all hospitals will be foundation trusts whether they want to or not, those that want to, are now caught in the bureacracy as by now the governers ought to have been elected.

    So it goes with GP’s originally it was a choice and now a demand.

    I suspect that the hidden agenda is privatisation, in that many GP’s either incapable (loads of them) or unwilling (another big bunch) will be happy to employ private agencies to do the donkey work, see what I mean? I am not unique in suspecting that.

    An interesting take in history. Way back when, when new labour was new, I applied for a particular position with one of the PCG’s the trouble was I was interviewed by people who knew me too well, I am the guy who compared during a public meeting on hospital closure that the difference between maintaining a hospital in the heart of the city and moving everything out was no more than the cost of a couple of cruis missiles. That got reported in the paper.

    I was hoping to put myself up as a governor of the foundation trust (because somebody has to) but that ain’t happening now.

    I wouldn’t bank on this governments commitments to autism, everything else they are doing is making the road harder, indeed they are digging it up.

    That is also why I think it is time the current chair of the NAS stepped down, he is too enmired in party politics to be neutral.

  5. David N. Andrews M. Ed., C. P. S. E. August 2, 2010 at 22:00 #

    “I wouldn’t bank on this governments commitments to autism, everything else they are doing is making the road harder, indeed they are digging it up.”

    I’m of the same mind, Larry. And, sadly, my mind wouldn’t change with the colour of the government: they’re all as bloody bad.

  6. stanley seigler August 2, 2010 at 22:37 #

    [l.rex say] wouldn’t bank on this governments commitments to autism, everything else they are doing is making the road harder, indeed they are digging it up.

    comment:
    Universal digging…and difficult to understand…circa 1968-70, CA-USA paved the road, passed cutting edge legislation (Lanterman Act), to provide a quality life for those with special needs (those on spectrum)…since then legs have been digging it up with 1984 doublespeak.

    stanley siegler

  7. Theo August 3, 2010 at 18:01 #

    This reminds me of the Blue Ribbon Panel of ’08 in my state. The panel travled across the state doing the same thing. Parents, professionals, and those on the spectrum (myself including) came and testified before them about the lack of services but it was gaeared more towards the general spectrum than the adults. In fact all they wanted to do was bring up the children children CHILDREN!!!

    Not that there is anything wrong with early detection and getting the proper tools early, but I couldn’t believe I was the only one trying to get through thier heads that children GROW UP!! And in my state, particularly if you are considered to “high fuctioning” once you hit 18 there is absolutely nothing! The only thing my fellows on the spectrum have is my advocacy group ASPIE. It’s redicoulous!!

    I am working on setting up a piolet project were I would like older aspies who have been in the world a while and have learned how to navigate through things to mentor younger aspies, in particular those around middle-school. It would be for development instead of just companionship. Families and mentors (I include the aspie in families duh I’m kind of a dork forgive) work out plans and goals to work on.

    Like learning how to deal with crowds, or how to deal with sensory issues in public, how to talk to employees etc.

    • Sullivan August 3, 2010 at 18:05 #

      Theo,

      I recall a similar reaction to a blue ribbon panel in our state. Perhaps we live in the same state, perhaps not. I wouldn’t be surprised if blue ribbon panels had the same focus all around the country.

      It is short sited. I’m the parent of a young child. I won’t be forever. I will spend a lot of time as the parent of an adult and, unfortunately, my (then adult) kid will spend a lot of time without me. It is in my best interests to focus attention on making a better life for autistic adults.

  8. stanley seigler August 3, 2010 at 19:35 #

    [sullivan say] I wouldnt be surprised if blue ribbon panels had the same focus all around the country…It is short sited…unfortunately, my (then adult) kid will spend a lot of time without me. It is in my best interests to focus attention on making a better life for autistic adults.

    COMMENT
    SHORT SIGHJTED: for sure, for sure, say the valley girls…

    California Legislative Blue Ribbon Commission on Autism
    Summary of Policy Recommendations
    1*Early identification of ASD;
    2*Education and treatment of children, adolescents, transitional youth, and adults with ASD; and
    3*A comprehensive and integrated continuum of programs, services, and funding required to address the “aging out” of children who comprise the current autism epidemic.

    The policy recommendations related to the three key areas are outlined in Chapters 2 through 8 of this report and summarized here as follows: [if interested goto: http://senweb03.senate.ca.gov/autism/documents/whatsnew/EXECUTIVE%20SUMMARY.pdf%5D

    We needed a commission to tell us this? Vice a commission: just do it! the CA Dept of Developmental Services (DDS) is required by law to take all action:

    CA law, Lanterman 4434b, say: The department [DDS] shall take ALL necessary actions to support regional centers to successfully achieve compliance with this section and provide high quality services and supports to consumers and their families. http://groups.yahoo.com/group/DDRIGHTS/message/5853

    surely DDS didnt need a commission to tell them the necessary actions…

    Another parent’s opine: “The main goal of this type of commission is to serve the legal/financial/political and personal agenda of some disability pimps and their friends.”

    Tho not that cynical, there has been little or no change…any Californians see change?

    stanley seigler

  9. Corinium Live In Carers August 23, 2010 at 10:02 #

    I think care services in general need help to improve. Thanks for the post and the interesting comments!

  10. Jiheishou Daigakusha December 21, 2010 at 07:01 #

    @ Laurentius Rex: All I wanna say is that NAS don’t give a (censored) ’bout us.

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