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Isherwood: Supporting autistic adults in Wales

Speech to the National Assembly for Wales.

"I call on every party in the Assembly to support the motion. At the invitation of the National Autistic Society, on 19 February, I hosted the launch of its I Exist campaign in the Assembly, which aims to improve the lives of adults with autism in Wales. At that event, I asked the Deputy Minister for Social Services to take account of the recommendations of the campaign report in the Assembly Government's action plan, and I remind her that she agreed to do so.

The I Exist campaign was informed by evidence gathered from adults with autism and their families from across Wales, who had responded to a survey inviting them to put forward their views and experiences.

The National Autistic Society also asked local authorities and local health boards in Wales for their views, and more than half of them responded. The campaign is based on what adults with autism and their families have to say about what happens when they do not receive the support that they need, and what it would take to improve their lives.

More needs to be done to tackle the specific difficulties that adults with autism in Wales face today, particularly those difficulties highlighted in the 'I Exist' report. We and the National Autistic Society welcomed the launch of 'The Autistic Spectrum Disorder (ASD) Strategic Action Plan for Wales' as a first step.

This is the first time that there are guidelines specifically on autism for local agencies, such as local authorities and local health boards. The plan outlines what the Assembly Government will do, and what local agencies have to do, to think about people with autism and their families, and how they provide services to them.

We particularly welcome the Assembly Government's commitment to resource the plan, to establish an autistic spectrum disorder support post in the Assembly, and to establish a national steering group. However, the document talks of little action on adult issues.

In a climate of scarce resources and capacity, we know that local agencies will focus only on the actions set out by the Assembly Government, if any. It is a concern to ensure that the real difficulties that adults with autism in Wales face are addressed adequately.

The 'I Exist' report has highlighted major barriers that adults with autism in Wales currently face. The only commitment to action in the plan is to set up a task and finish group to consider the specific issues that adults have, and to act on its recommendations.

The National Autistic Society's research has revealed that, if people with autism received the support that they needed at the right time, they could lead more independent and fulfilled lives.

However, wherever on the autism spectrum people are, they struggle to get appropriate support. Without that, many adults and their families find themselves in a desperate situation.

I am told that adults with autism in Wales desperately need help, but are not receiving it. The adult autism population has been largely ignored in the past under successive Governments, but the action plan places an expectation on authorities to develop an autistic spectrum disorder co-ordinating group in each local area. We understand that these groups should inform and support the planning for, and commissioning of, services for people with autistic spectrum disorders.

In rolling out the action plan, the Assembly Government must ensure that these groups give consideration to adult issues and that there are strong links between the work being undertaken for children's services and that for adults. A cohesive and co-ordinated approach is vital, especially to ensure that there are good structures for sharing information between children's and adults' services, to plan for those young people who will be coming through the system in the future.

There is a lack of understanding of autism in the assessments of need, and a shortage of staff who are trained to deal with autism. When people with a learning disability access services, they can find that they are not always the right kind of services and that they do not meet their needs as well as they could.

For adults who do not have an accompanying learning disability, it can be very difficult to access a service. Getting any acknowledgement of the fact that they require a service can be extremely difficult. This is because of how the structure is set up, and means that adults with Asperger's syndrome in particular find that they fall between learning disability and mental health services. They can find themselves being passed between these two teams, receiving nothing.

In its recent review of learning disability services, Health Inspectorate Wales highlighted the problems that adults with Asperger's syndrome face, and noted that the Assembly Government should produce guidance on this issue. Forty one per cent of local agencies say that the reason they do not provide services for adults with autism is because they do not fit easily into learning disability or mental health services.

Only three local authorities and three local health boards have a system in place to manage adults with autism. An example of one county that has addressed this problem is Conwy, which has set up a vulnerable adults' panel. The Assembly Government needs to put in place a statutory requirement for local agencies to have a protocol that makes sure that adults with autism can access an assessment.

In the 'I Exist' report for Wales, adults said that a lack of support was the biggest cause of the problems that they experience. Sixty three per cent of adults with autism have had problems trying to access the right support, and 36 per cent are not in receipt of a service because their local authority does not have provision in place. As one adult with autism said,

'There is no front-line support and a complete and utter lack of understanding. In fact, my own GP did not have my diagnosis on file. It has been really hard to even get any help'.

The provision of support and services for adults with autism across Wales is extremely patchy. A lack of autism-specific services affects everyone with autism, whether they have a learning disability or Asperger's syndrome. People with autism who do not receive the right support at the right time can become isolated, anxious and can develop mental health problems.

Sixty three per cent of adults with autism have experienced anxiety due to a lack of support, and 49 per cent—almost half of all adults with autism—have experienced mental health problems because of the lack of support. An example of local action to address the problem of lack of support is the National Autistic Society's Conwy and Denbighshire branch, which I have visited, and which is run by people who have Asperger's syndrome. They recognised that more needed to be done for adults in the local area and so established their own adult support group.

National leadership is required from the Assembly Government. Having an autistic spectrum disorder action plan is a good start. However, we must now ensure that specific commitments are made by the Assembly Government to address the difficulties that adults face. Local agencies want that, too.

Ninety one per cent of local authorities felt that the Assembly Government needed to take further action to help them to support adults with autism; 67 per cent—two thirds—of local health boards said that they would benefit from more guidance from the Welsh Assembly Government around commissioning services for people with autism. We call on the Welsh Assembly Government to publish good practice guidance for local agencies on how to commission services for adults with autism.

Local agencies told the National Autistic Society in its survey that they felt that ring-fenced funding would be helpful to ensure that they spent the money on autism services and support. We know that the Assembly Government has allocated £1.7 million, recurring from last year, to support the delivery of 'The Autism Spectrum Disorder (ASD) Strategic Action Plan for Wales', which is paid to local authorities through the revenue support grant.

However, this money is for children and young people's services. As the money is not ring-fenced, there is a lack of clarity over how this money has been spent. It is a concern that some of this money will not have been spent on autism, and we need to ensure that that does not happen again in the future.

We understand that £1.8 million has been announced to support the plan this year, but we want to know whether the Assembly Government will commit to putting formal monitoring arrangements in place for the £1.7 million to record how the money is spent, and to ensure that it is spent on autism. We also want to know how the £1.8 million will be allocated. We have been told that it will be ring-fenced, but will some of this money be used to support adults?

Not receiving the support needed could have an impact that manifests itself as anxiety, mental health problems, social exclusion, an overreliance on family, and escalating needs—hence, escalating costs. The Welsh Assembly Government, local authorities and local health boards must therefore act to ensure that all people with autism receive the support and services that they need at the right time, so that they can lead more independent and fulfilling lives."

"Galwaf ar bob plaid yn y Cynulliad i gefnogi'r cynnig. Yn dilyn gwahoddiad gan y Gymdeithas Awtistiaeth Genedlaethol, ar 19 Chwefror yr oeddwn yn croesawu lansiad ei hymgyrch Rwy'n Bodoli yn y Cynulliad, sy'n ymdrech i wella bywydau oedolion ag awtistiaeth yng Nghymru.

Yn y digwyddiad hwnnw, gofynnais i'r Dirprwy Weinidog dros Wasanaethau Cymdeithasol ystyried argymhellion adroddiad yr ymgyrch yng nghynllun gweithredu Llywodraeth y Cynulliad, a hoffwn ei hatgoffa ei bod wedi cytuno i wneud hynny.

Mae'r ymgyrch Rwy'n Bodoli yn seiliedig ar dystiolaeth a gasglwyd oddi wrth oedolion ag awtistiaeth a'u teuluoedd o bob cwr o Gymru, a oedd wedi ymateb i arolwg yn eu gwahodd i gyflwyno eu sylwadau a'u profiadau. Hefyd, gofynnodd y Gymdeithas Awtistiaeth Genedlaethol am farn awdurdodau lleol a byrddau iechyd lleol Cymru, ac ymatebodd dros eu hanner.

Mae'r ymgyrch yn seiliedig ar yr hyn sydd gan oedolion ag awtistiaeth a'u teuluoedd i'w ddweud am yr hyn sy'n digwydd pan na fyddant yn cael y gefnogaeth y mae ei hangen arnynt, a'r hyn y mae ei angen i wella eu bywydau.

Mae angen gwneud mwy i fynd i'r afael â'r anawsterau penodol y mae oedolion ag awtistiaeth yng Nghymru'n eu hwynebu heddiw, yn enwedig y rhai hynny sydd wedi'u cynnwys yn yr adroddiad 'Rwy'n Bodoli'. Yr oeddem ni a'r Gymdeithas Awtistiaeth Genedlaethol yn croesawu lansio 'Cynllun Gweithredu Cymru ar gyfer Anhwylder y Sbectrwm Awtistig (ASD)' fel cam cyntaf. Dyma'r tro cyntaf inni gael canllawiau ar gyfer awtistiaeth yn benodol ar gyfer asiantaethau lleol, megis awdurdodau lleol a byrddau iechyd lleol.

Mae'r cynllun yn amlinellu'r hyn y bydd Llywodraeth y Cynulliad yn ei wneud, a'r hyn y bydd yn rhaid i asiantaethau lleol ei wneud, i feddwl am bobl ag awtistiaeth a'u teuluoedd, a sut y maent yn darparu gwasanaethau ar eu cyfer. Yr ydym yn croesawu'n fwyaf arbennig ymrwymiad Llywodraeth y Cynulliad i ariannu'r cynllun, i sefydlu swydd cefnogi anhwylder sbectrwm awtistig yn y Cynulliad, ac i sefydlu grwp llywio cenedlaethol. Fodd bynnag, nid oes llawer o sôn yn y ddogfen am weithredu ar faterion sy'n ymwneud ag oedolion.

Mewn dyddiau pan mae adnoddau a gallu'n brin, gwyddom y bydd asiantaethau lleol yn rhoi sylw i'r gweithredoedd a amlinellwyd gan Lywodraeth y Cynulliad yn unig, os hynny. Mae'n her ceisio sicrhau bod yr anawsterau gwirioneddol y mae oedolion ag awtistiaeth yng Nghymru'n eu hwynebu'n derbyn sylw digonol. Mae'r adroddiad 'Rwy'n Bodoli' wedi tynnu sylw at rwystrau difrifol y mae oedolion ag awtistiaeth yng Nghymru'n eu hwynebu ar hyn o bryd.

Yr unig ymrwymiad yn y cynllun i weithredu yw sefydlu grwp gorchwyl a gorffen i ystyried y materion penodol sy'n effeithio ar oedolion, a gweithredu ar ei argymhellion. Dangosodd ymchwil y Gymdeithas Awtistiaeth Genedlaethol, petai pobl ag awtistiaeth yn derbyn y gefnogaeth sydd ei hangen arnynt ar yr adeg iawn, y gallant fyw bywydau mwy annibynnol a llawn.

Fodd bynnag, ym mha le bynnag ar y sbectrwm awtistig y mae pobl, maent yn brwydro i gael cefnogaeth briodol. Heb y gefnogaeth honno, mae llawer o oedolion a'u teuluoedd yn canfod eu hunain mewn sefyllfa anodd dros ben. Dywedwyd wrthyf fod oedolion ag awtistiaeth yng Nghymru yn crefu am gymorth, ond nad ydynt yn ei dderbyn.

Mae oedolion ag awtistiaeth wedi'u hanwybyddu i bob pwrpas o dan y Llywodraethau diwethaf, ond mae'r cynllun gweithredu'n rhoi disgwyliad ar awdurdodau i ddatblygu grwp cydlynu anhwylderau yn y sbectrwm awtistig ym mhob ardal leol. Yr ydym ar ddeall y dylai'r grwpiau hyn fod yn sail i'r broses gynllunio a chomisiynu gwasanaethau ar gyfer pobl ag anhwylderau yn y sbectrwm awtistig, a'i chefnogi.

Wrth gyflwyno'r cynllun gweithredu, rhaid i Lywodraeth y Cynulliad sicrhau bod y grwpiau hyn yn ystyried materion sy'n effeithio ar oedolion a bod cysylltiadau cryf rhwng y gwaith sy'n cael ei wneud ar gyfer gwasanaethau plant a gwasanaethau oedolion. Mae ymagwedd gydlynus a chydlynol yn hanfodol, yn enwedig i sicrhau bod strwythurau da ar waith i rannu gwybodaeth rhwng gwasanaethau plant ac oedolion, i gynllunio ar gyfer y bobl ifanc hynny a fydd yn dod trwy'r system yn y dyfodol.

Mae diffyg dealltwriaeth o awtistiaeth yn yr asesiadau o angen, a phrinder staff sydd wedi'u hyfforddi i ddelio ag awtistiaeth. Pan fydd pobl ag anabledd dysgu'n defnyddio gwasanaethau, byddant yn gweld ar adegau nad dyna'r math o wasanaethau sydd eu hangen arnynt ac nad ydynt yn diwallu eu hanghenion gystal ag y gallent. Yn achos oedolion sydd heb anabledd dysgu cysylltiedig, gall fod yn anodd iawn cael gafael ar wasanaeth.

Gall fod yn anodd dros ben cael unrhyw fath o gydnabyddiaeth o'r ffaith bod angen gwasanaeth arnynt o gwbl. Mae hyn yn digwydd o ganlyniad i'r ffordd y mae'r strwythur wedi'i sefydlu, ac mae'n golygu bod oedolion â syndrom Asperger yn fwyaf arbennig yn canfod eu bod yn syrthio rhwng dwy stôl anabledd dysgu a gwasanaethau iechyd meddwl. Maent yn cael eu trosglwyddo rhwng y ddau dîm, ac yna'n derbyn dim byd yn y diwedd.

Yn ei arolwg diweddar o wasanaethau anabledd dysgu, tynnodd Arolygiaeth Gofal Iechyd Cymru sylw at y problemau y mae oedolion â syndrom Asperger yn eu hwynebu, a nododd y dylai Llywodraeth y Cynulliad gynhyrchu arweiniad ar y mater. Dywed 41 y cant o asiantaethau lleol mai'r rheswm nad ydynt yn darparu gwasanaethau ar gyfer oedolion ag awtistiaeth yw nad ydynt yn ffitio'n daclus o fewn anabledd dysgu na gwasanaethau iechyd meddwl.

Dim ond tri awdurdod lleol a thri bwrdd iechyd lleol sydd â system ar waith i reoli oedolion ag awtistiaeth. Un enghraifft o sir sydd wedi rhoi sylw i'r broblem hon yw Conwy, sydd wedi sefydlu panel oedolion agored i niwed. Mae angen i Lywodraeth y Cynulliad gyflwyno gofyniad statudol i sicrhau bod gan asiantaethau lleol brotocol sy'n gofalu bod oedolion ag awtistiaeth yn cael eu hasesu.

Yn yr adroddiad 'Rwy'n Bodoli' ar gyfer Cymru, dywedodd oedolion mai diffyg cefnogaeth oedd prif achos y problemau yr oeddent yn eu hwynebu. Mae 63 y cant o oedolion ag awtistiaeth wedi wynebu problemau wrth geisio cael gafael ar y gefnogaeth briodol, ac nid yw 36 y cant yn derbyn gwasanaeth am nad oes gan eu hawdurdod lleol ddarpariaeth ar eu cyfer. Fel y dywedodd un oedolyn ag awtistiaeth,

'Does dim cefnogaeth rheng flaen a dim dealltwriaeth o fath yn y byd. Yn wir, doedd fy neiagnosis ddim ar fy ffeil gan fy meddyg fy hunan. Mae wedi bod yn hynod o anodd cael unrhyw gymorth o gwbl'.

Mae cefnogaeth a gwasanaethau i oedolion ag awtistiaeth ledled Cymru yn ddarniog dros ben. Mae diffyg gwasanaethau awtistiaeth benodol yn effeithio ar bawb ag awtistiaeth, boed ganddynt anabledd dysgu neu syndrom Asperger. Os nad yw pobl ag awtistiaeth yn derbyn y gefnogaeth briodol ar yr adeg iawn, gallant fod yn ynysig ac yn bryderus, a gallant ddatblygu problemau iechyd meddwl. Mae 63 y cant o oedolion ag awtistiaeth wedi profi pryder o ganlyniad i ddiffyg cefnogaeth, ac mae 49 y cant—bron i hanner yr oedolion ag awtistiaeth—wedi profi problemau iechyd meddwl o ganlyniad i ddiffyg cefnogaeth.

Un enghraifft o weithredu'n lleol i roi sylw i broblem diffyg cefnogaeth yw cangen Conwy a sir Ddinbych o'r Gymdeithas Awtistiaeth Genedlaethol, cangen yr wyf wedi ymweld â hi, sy'n cael ei rhedeg gan bobl â syndrom Asperger. Yr oeddent yn cydnabod bod angen gwneud mwy ar gyfer oedolion yn yr ardal felly aethant ati i sefydlu eu grwp cefnogi eu hunain ar gyfer oedolion.

Mae angen arweinyddiaeth genedlaethol gan Lywodraeth y Cynulliad. Mae datblygu cynllun gweithredu anhwylder sbectrwm awtistig yn ddechrau da. Fodd bynnag, rhaid inni yn awr sicrhau bod Llywodraeth y Cynulliad yn gwneud ymrwymiadau penodol i roi sylw i'r anawsterau y mae oedolion yn eu hwynebu. Mae asiantaethau lleol am weld hynny hefyd.

Yr oedd 91 y cant o awdurdodau lleol yn teimlo bod angen i Lywodraeth y Cynulliad gymryd camau pellach i'w cynorthwyo i gefnogi oedolion ag awtistiaeth; dywedodd 67 y cant—dau draean—o'r byrddau iechyd lleol y byddant yn elwa ar fwy o arweiniad gan Lywodraeth y Cynulliad ar gomisiynu gwasanaethau i bobl ag awtistiaeth. Galwn ar Lywodraeth Cynulliad Cymru i gyhoeddi arweiniad arferion da i asiantaethau lleol ar sut i gomisiynu gwasanaethau ar gyfer oedolion ag awtistiaeth.

Dywedodd asiantaethau lleol wrth y Gymdeithas Awtistiaeth Genedlaethol yn ei harolwg eu bod o'r farn y byddai arian wedi'i neilltuo'n ddefnyddiol i sicrhau eu bod yn gwario'r arian ar wasanaethau a chefnogaeth i bobl ag awtistiaeth. Gwyddom fod Llywodraeth y Cynulliad wedi dyrannu £1.7 miliwn, ers y llynedd, i gynorthwyo i gyflawni 'Cynllun Gweithredu Cymru ar gyfer Anhwylder y Sbectrwm Awtistig (ASD)', a delir i awdurdodau lleol trwy'r grant cynnal refeniw. Fodd bynnag, mae'r arian hwn ar gyfer gwasanaethau plant a phobl ifanc.

Gan nad yw'r arian wedi'i neilltuo, mae diffyg eglurder ynghylch sut y gwariwyd yr arian hwn. Mae'n achos pryder na fydd peth o'r arian hwn wedi cael ei wario ar awtistiaeth, ac mae angen inni sicrhau na fydd hynny'n digwydd eto yn y dyfodol.

Deallwn fod £1.8 miliwn wedi'i gyhoeddi i gefnogi'r cynllun eleni, ond yr ydym am gael gwybod a fydd Llywodraeth y Cynulliad yn ymrwymo i gyflwyno trefniadau monitro ffurfiol ar gyfer yr £1.7 miliwn i gofnodi sut y mae'r arian yn cael ei wario, ac i sicrhau ei fod yn cael ei wario ar awtistiaeth. Yr ydym hefyd am gael gwybod sut y bydd yr £1.8 miliwn yn cael ei ddyrannu. Dywedwyd wrthym y bydd yn cael ei neilltuo, ond a fydd peth o'r arian hwn yn cael ei ddefnyddio i gefnogi oedolion?

Gallai peidio derbyn y gefnogaeth sydd ei hangen gael effaith sy'n ei hamlygu ei hun fel pryder, problemau iechyd meddwl, allgáu cymdeithasol, gorddibyniaeth ar y teulu, ac anghenion cynyddol, sy'n arwain at gostau cynyddol.

Rhaid i Lywodraeth Cynulliad Cymru, awdurdodau lleol a byrddau iechyd lleol weithredu felly i sicrhau bod pawb ag awtistiaeth yn derbyn y gefnogaeth a'r gwasanaethau sydd eu hangen arnynt ar yr adeg iawn, er mwyn eu galluogi i fyw bywydau mwy annibynnol a llawn."

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