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Pre- Budget Submission
to the Department of Health and Children and the Department of Education and Science October 2005 Services for People with an Intellectual Disability and Autism
SUMMARY OF REQUIREMENTS I. Health Service Funding Provision (see page 4 for details) · That,
in the short-term, the multi-annual revenue funding for people with an
intellectual disability and autism be increased from €29 million
per year to €75 million per year.
· That appropriate capital funding be allocated. · That the cost of enhancing current services be quoted as a separate calculation in all Budget estimates. II. Planning and Accountability (see page 6 for details) That a clearly researched plan be developed which is aimed at
· Eliminating waiting lists for services over a ten year period
· Enhancing existing services in order to bring them up to acceptable levels That an annual report be published:
· Outlining the progress of the Plan
· Indicating the reasons for any failure to reach targets · Stating how these failures will be corrected in the following year. That, as part of this plan,
negotiations be entered into between the Department of Health and
Children and the providers of services, aimed at agreeing on a
realistic assessment of the cost of services. This will ensure
that the plan referred to above will be capable of producing accurate
forecasts.
III. Support Services (see page 7 for details) That present funding be doubled.
IV. National Standards for Disability Services (see page 7 for details) That the National Standards for
Disability Services be implemented immediately and that the necessary
funding be put in place to ensure their effective implementation.
V. Inappropriate Placement in Psychiatric Hospitals (see page 7 for details) That the scandal of inappropriate placement in psychiatrist hospitals be urgently resolved.
VI. Special Needs Resources in Education (see page 8 for details) That the process of resource
allocation be totally reassessed. The present system of
allocating resources by formula rather than by need is leading to some
children not getting the resources they require while, at the same
time, money is being wasted in areas where no need exists.
INTRODUCTION
It is the belief of the NPSA that the situation where people with intellectual disability and autism must be placed on ever lengthening waiting lists for services is morally wrong and must end. In this submission we take a look at Budget 2005 and the promised multi-annual funding for the years 2006 to 2009 and conclude that a much larger sum must be provided if the issue of waiting lists is to be effectively addressed. We support the statement made by the Minister for Finance Mr. Brian Cowen in his budget speech in December, 2005. He stated that up to now the government disability programme “did not benefit from the type of professional lobbying and support which the acute hospital and primary care programmes traditionally got from strong, organized, interests in the health services. Families of people with disabilities had their hands full simply trying to cope. Nor did it attract the same level of public attention as issues such as waiting lists, medical cards, etc. Instead, most of the running had to be made by voluntary organisations.” We welcome the Minister’s attitude and feel it, more than the actual details of the Budget, gives hope that this man, at least, has some understanding of the situation in which many families find themselves. We welcome also the concept of multi-annual funding. However, the sums allocated appear to fall far short of what is required. Also, it is with great regret we must state that most of the other issues raised in our submission last year have seen almost no improvement. I. Health Service Funding Provision
1 The number of service places allocated in the Budget
Government press statements and
media coverage at the publication of Budget 2005 gave the impression
that the service provisions on disability were unprecedented.
While the situation is better than in recent years, when compared with
the “Cowen Plan” which ran over 2000, 2001 and 2002 the
figures are not quite so spectacular. Table 1 compares the first
year of the “Cowen Plan” as stated in the budget for the
year 2000 with the figures promised for 2005. Clearly Budget 2005
pales into insignificance against the year 2000.
TABLE
1
Cowen Plan for Year 2000 Budget 2005
Residential Places 555 270 Respite places 154 90 Day places 700 400 TABLE
2
Cowen Plan over 2000, 2001, 2002
Total in Budget 2005
Residential Places 1107 1290 Respite places 330 430 Day places 2000 2540 Even looking at the overall total
(Table 2) the Budget 2005 figures are not a great deal higher than
those of the “Cowen Plan”. However, the 2005 figures
are spread over five years while the “Cowen Plan” figures
only cover three years. Therefore, allowing for emergencies,
increased population and general demographic trends, the effect of
Budget 2005 will be considerably less than that of the Cowen Plan.
2 The Costings in Budget 2005
i. Differences in Cost Estimates:
In fact, the issue is complicated further by the fact that the end result for 2000 never remotely looked like the figures in Table 1 above. The Service Plans sent in by the service providers stated that they could only supply 425 residential places with the money provided (instead of 555). It is a common feature for the service plans sent in by service providers not to correspond with the figures stated in the Budget. This is because there appears to be no agreed average cost between the two sides. There is a discrepancy between Government and Service Provider estimates which reduce the projected number of places by over 30%. For example, the Minister costs a residential place at an average of €70,000 per year. The Federation of Voluntary Bodies’ average cost is €106,000 per year. If the latter estimate is correct this means that there will be a reduction of over 30% in the actual number of places created. That is, we may expect a drop of 440 on the Minister’s estimate of 1290 residential places. So, of those waiting for residential places (1893 people are listed on the 2004 database) there would be more than 1000 still waiting at the end of 2009. ii. No Allowance is Made for Enhancing Existing Services: The picture is further complicated by the decision of the HSE in 2005 to allow 30% of the allocations to be used for enhancing existing services. Therefore, the final figure is further reduced. As Table 3, below, shows, the actual total of places provided by 2009 is likely to be 597. This means that at the end of the five-year period more than two thirds of the 2004 waiting list will remain untouched. TABLE
3
'05 '06
'07 '08
'09 Total
Residential Places Promised 270 255 255 255 255 1290 Reduced to allow for costing differences 178 168 168 168 168 850 70% will be new places 125 118 118 118 118 597 If this pattern were to continue
it would be 2020 before the current waiting list is eliminated (see
Table 4). Obviously, this does not allow for more people
requiring services over that time. The above estimate is shown to
be erring on the optimistic side by the waiting list figure of 2008 in
the 2005 NIDD Report.
TABLE
4
'09 '10
'11 '12
'13 '14
'15 '16
'17 '18
'19 '20 Total
Residential Places Promised 1290 255 255 255 255 255 255 255 255 255 255 255 4095 Reduced to allow for costing differences 850 168 168 168 168 168 168 168 168 168 168 168 2698 70% will be new places 597 118 118 118 118 118 118 118 118 118 118 118 1895 Therefore, if we are serious
about eliminating waiting lists it will be necessary to provide a
multi-annual funding allocation for intellectual disability and autism
which is two and a half times the current figure of €29 million
per year. That is, the annual figure should be approaching
€75 million.
II. Planning And Accountability
It is Necessary to Plan How Waiting Lists will be eliminated Clearly, what has been seriously lacking in Government decisions on service provision for people with intellectual disabilities and autism is a serious and carefully laid out plan aimed at eliminating waiting lists within a reasonably short time. For this to succeed there needs to be clear and accurate information on: · The
numbers needing services. This will only happen when (i) it is a
requirement that all people needing services be recorded on the NIDD or
(ii) the promised assessment procedure in the Disabilities Act 2005
actually happens and accurate records of needs are kept.
· Exactly what new services are created each year and who receives them. Over the period of the Cowen Plan and since, this information was not available to any one single monitoring source. · Funding for enhanced service provision should be allocated separately and should not be included in the plan to remove waiting lists. The NPSA understands the need to enhance existing services, many of which have suffered because the emphasis has been placed on creating new services. However, in the interests of transparency and good planning it is important that funding for these much needed enhancements be clearly described as such. · Adequate supervision and accountability of all moneys allocated. The lack of supervision of how State Funding was used during the period of the Cowen Plan has been a source of concern to the NPSA. It is our belief that this practice should stop and that all those who receive a service should be directly accountable for how this money is spent. III. Support Services
Therapies: For some years now we have been pointing out that, in the interests of all our children with intellectual disabilities and autism, it is vital to provide appropriate therapies immediately. It is not satisfactory to depend on the new courses for the provision of graduates to service the need. The Bacon Report clearly indicated that to do so will leave the people who need such services waiting until as late as 2015 to have their needs met. The shortage of personnel in this area will become more acute with the assessment provisions in both disabilities bills putting a further strain on the numbers of therapists that will be available The government must seriously tackle the problem of shortages in these areas. As we have previously said, this can be done by at least doubling the number of student places in the above disciplines and, in the short term, sourcing personnel from other countries. Psychologists: The EPSEN Act and the disabilities Act 2005 both promise assessments for people with disabilities. For people with intellectual disabilities and autism this will inevitably require large input from psychologists. At the same time psychologists are needed to service the current needs of the sector. As with therapists this requires a serious attempt at finding innovative ways to source the necessary personnel. IV. National Standards for Disability Services:
The national standards developed more than a year ago by the NDA and the DOHC have still not been put into operation. These standards were agreed after an exhaustive process involving all those with any connection to the area of disability, including people with disabilities, carers, families, service providers, government agencies, etc. It is critical that this initiative is now given the full support of Government. A specific and separate funding allocation should now be made to ensure that all involved have the necessary resources (including training, finance and personnel) to bring standards up to the required level. V. Psychiatric Hospitals
Last year we said “inappropriate placement of intellectually disabled people as residents in psychiatric hospitals [including de-designated units in former psychiatric hospital units] continues to be a serious issue. It is more so because, rather than moving people out from such institutions, we have seen a small number of new placements in the past twelve months. As we stated last year we see it as a matter of simple human rights that this position should not be allowed to continue. The current group of 494 people must be removed immediately and all steps must be taken to ensure that no further placements occur”. The situation has improved marginally with the figure being now at 396. However, while the reduction is welcome, it is now necessary to end this situation completely. VI. Special Needs Resources in Education
As we stated last year we are concerned by the circulars from the Special Education Section of the DES which assign resources not on the basis of needs but on the basis of the child’s diagnosis. We must point out that when people speak of students with special educational needs the term is meant to be taken literally. These students, while sharing certain characteristics with other students who have the same broad diagnosis, also have their own specific and very special needs. These cannot be satisfied unless the formula-based approach which is currently being insisted on by the DES is adjusted to allow for these individual requirements. Clearly, such adjustments will require extra funding. We note also that, while funds are not being made available to cater for the special needs of some students the general allocation scheme introduced this year is giving some schools funding that they do not need. In the same way that some students have greater needs than others, also some schools have lesser needs than others. This system fails to differentiate the particular needs of the school. The end result is that those schools who have tried hardest to cater for special needs are suffering in favour of those who have tried least. VII. CONCLUSION
In summary this submission states that it is necessary for the State to respect people with intellectual disability, people with autism and their families by providing the funds required to give them adequate services. Equally, we feel that, in justice to all, it is the Government’s duty to ensure that this money is used to enhance the lives of people with disabilities and that it is clear to all that such is occurring. |