Source document: https://docs-lawep.s3.us-east-2.amazonaws.com/1697750357327.pdf (Ireland)
We are parents of two sons with Autism and an intellectual disability, one severe and the other more mild.

Both our sons are with HSE funded section 39 bodies and our experience spans over 12 years of dealing with a variety of such service providers, as well as the previous education based services in their earlier years.
In summary our experience is that the Adult Services often lack a coherent content & structure and cannot be expected to deliver a decent service without a fundamental overhaul of how it is structured.

In looking to the future (especially as progressively we will become less able to continue our care for our sons), we cannot see any level of thought or preparation by Services for their longer term support & care needs.
Before we focus on services for Adults with disabilities, we comment briefly on the earlier second level educational services, to highlight the obvious differences between the two approaches; 1.

The educational service up to age 18-19, while far from perfect, involves some degree of uniformity in terms of structure, content & also delivery of a service.
There is a physical school infrastructure, with defined (if variable for individual needs) curriculums, and educational programmes, teachers, SNAs and Principal, with some level of clinical support.

There is a “product” that is tangible and measurable, which also facilitates a consistent repeatable process and a range of target outcomes.

2.

The Adult Services by contrast is vague and un-determined.
It is very difficult for parents to assess the theoretical range of initial options available, much less to find actual placements with the different services, as they try to find a suitable adult service, which will adapt over the next 50-70 years.

Managing the chosen service is a lifelong chore.

The following are some of the main issues we have encountered transitioning to & managing the adult placements for our sons, over the past 12 years; 1.
Multiplicity of external agencies in the adult services, and parents have to initially navigate through this array of intangible services in getting a first placement.

a.

The school typically has a designated person with responsibility for the adult placements.

This person struggles for any real insight into the somewhat nebulous range of options or the actual placements available (we saw no evidence of follow- up as to how the placement was actually working).
There is certainly nothing resembling something like a CAO coordination of services.

b.

The HSE disability manager typically becomes involved in the last school year.

c. Neither can offer a meaningful educational or developmental outline of what is best for the school leaver 2.

Physical infrastructure is noticeable by its absence, especially if compared with other third level institutions, with nothing resembling a third level college or University.
Typically the “placement” is often in warehouse type settings, usually in industrial Estates which are usually not very accessible by public transport.

Our younger son was naturally depressed in comparing his placement with other third level colleges.

Because of the lack of any physical infrastructure, much time is spent travelling to and from to ad-hoc placements.

3.

Actual placement content; There is little resembling an educational curriculum or course syllabus, or training programme.
Usually a statement of needs is expressed in an Individual Educational or Development Plan (IEP) but in our experience these are often vague and aspirational, and certainly there is little bridging between the previous educational settings and the adult placements.
Personally as parents we spent over a full year before our youngest son left school trying to source a suitable placement, including us detailing a clear IEP with the service provider, only to discover very quickly that the target placement service was something of a mirage, and lacking virtually everything we had been promised.

4.
4.

Staffing of the service - The services rarely have meaningful or structured educational or clinical support, and most of the people working in these services tend to come more from a social care qualification.

5.

Clinical Services - This is especially a marked shortage of psychiatric services, at a crucial stage for young adults .

The absence of this often leads to a major deterioration in the mental health of young adults, and ends up requiring far higher levels of care.
Oddly some services have materially better psychiatric services than others, even though all are HSE funded, but there is no scope for working across different services.

We see little integrated cooperation between the different 3rd level services or Universities and the different Service Providers.

6.

The service hours are more akin to pre-school, usually truncated and rarely facilitate both the parents being able to engage in employment (already a common feature for 2nd level education anyway).

7.
7.

Evenings & weekends In addition to truncated day services, there is little or no evening or overnight services, to foster independent living in the future and to offer a break to parents, especially as they age.

8.

The output from this service after a few years & what happens when we as parents are no longer capable of advocating for our sons?, a.

Unemployment is the norm for adults with disabilities, but this is hardly surprising b. given the paucity of the service in the preceding years.
Independent or even supported Living should be the target, but we see no working towards this objective.

c. When parents can no longer, who will advocate for them within the existing inadequate service, where will they live, who will be their guardians?

What are their options, is there a Fair Deal?

Our experience is that nobody is planning for this future certainty.

9.
9.

Oddly the support ratios tend to be higher for adult services than in the educational phase, which is counterintuitive as the natural expectation should be that the service users are maturing and developing and thus need lower support.

Our experience is that these higher support ratios are a natural consequence of a poorly structured service, with multiple “reinventing of the wheel” , 10.
Governance - Obviously these services are almost exclusively funded by the HSE but the oversight and governance by the HSE of the actual service is invisible to us.

a.

State investment into services is very material but parents are not told of or aware of the actual cost of the adult services but from our own experience these are materially more expensive than the earlier education system.

b.
b.

We assume the HSE can provide the Committee with the overall budgetary & Financial costs for the total service but it appears to us that, at the individual level, there is a much larger level of expenditure for a much reduced service.

Is there a deliberate policy of not informing the parents of budgets to reduce their reduce their scope to influence the service?
c. d. We have been very fortunate to have had a very proactive disability manager but our impression is that he was going well beyond his mandate.

We don’t see a structured detailed review with the various Service Providers, and instead the individual Disability Manager has to attempt to provide such a service singlehandedly.

In our experience this vague and virtually incoherent service provision cannot be expected to provide favourable outcomes.
e. What could be done to improve – The starting prerequisite is to plan a coherent service.

The following are immediate, low cost or more likely cost saving actions that would be beneficial to people with disabilities and also the wider society; None of these should cost anything material, but rather involve more intelligent use of existing resources; 1.

Agree appropriate educational, training and work experience courses; most likely at QQ I 2. level 3-4, and define course content/syllabus.
Integrate these with the existing third level colleges and universities bringing on board the range of clinical and social care students, who can get first-hand experience helping in these courses.

Involve the associated lecturers and students fully in these courses.

3.

Clinical Support – allow psychiatric services from individual agencies operate across all the agencies, to address critical shortages in particular services.
The HSE should also facilitates the provision of external & private practice psychiatrists, including those from universities and other colleges.

4.

Physical Infrastructure – students with disabilities should be integrated on 3rd level campus, rather than being banished to industrial estates, allowing them avail of the associated facilities, while also achieving a greater level of social inclusion.

5.
5.

Social integration opportunities – dedicated programmes for these, covering a range of social & leisure activities, rather than rely on volunteer social clubs (aging parents cannot provide a proper social service).

6.

Service hours – a. is a 9-5 service really not achievable within the above setting, and also avoid dispiriting commuting between far flung placements.

b.

We urgently need evening, overnight & weekend care.

7.
7.

Employment Opportunities; Target the range of work that could be suitable, a. work with the wide range of business who are extremely keen to contribute to this issue, many are starting to develop quotas for people with disabilities.

Agree work placements, incent business to take on such hidden talent, bring these workers into the community, and improve everyone’s quality of life.

b.

Target the range of opportunities within the public sector, from hospitality to service to health care.

8.
8.

Residential living – The State should plan for supported living, improving the quality of life of the “service users” and parents.

Initially this could be integrated into college settings, and then have Supported living facilitates developed for later years, especially to prepare for the future where parents are no longer living or can no longer provide the supported living environment.