Kate de Josselin, Prader-Willi Syndrome Australia

Peak body for people with disability

The Prader-Willi Syndrome Australia (PWSA) welcome the opportunity to submit a submission on behalf of the adult members of our PWS community.
As a group PWSA believes that the present delivery of the Disability Employment Service (DES) program does not in its present format adequately meet the support needs of adults with PWS who are wishing to access the workplace. At present their job options are limited and volunteer work and positions in supported workplaces are often accepted by default as the supports they require to access other job placements are not effectively implemented.
Prader­-Willi syndrome (PWS) is a rare, complex multistage genetic disorder affecting multiple systems in the body. It significantly impacts on behaviour, mental and physical health. People with PWS require cognitive, social and learning support throughout their lives. A person with PWS can live a healthy, fulfilling life when they have ongoing, consistent support from people who understand the intricacies of PWS. Learn more about PWS from the international organization www.ipwso.org.
PWS is a spectrum disorder and there is a percentage of the PWS population who are more than capable of working with appropriate support in a variety of work placements. Many people with PWS have a valuable contribution to make to the workplace yet very few have achieved their full employment potential. Research findings reinforces the fact that participation in purposeful and engaging work is important in the delivery of health & wellbeing benefits for people with PWS.
The transition to work in particular must be carefully planned and implemented with clear channels of communication between all participants.
The best fit model for achieving good employment outcomes long term may involve a transition period that could be a combination of different work activities including the following:
-volunteer work,
-“Place in training” programs, with specialized support provided by disability providers that may also be responsible for other aspects of their day program.
– supported participation in further study or
– supported employment or
-supported work programs in mainstream workplace with ongoing assistance provided by either a DES employment provider or with specialized support provided by disability service providers that may also be responsible for other aspects of their day program.

For many people with PWS the demands of working full time can be unrealistic due to physical, behavioural and mental health wellbeing and part-time employment may be a more realistic option combined with other work /lifestyle activities that may be a part of their NDIS package. This more realistic and flexible approach would be more conducive to achieving successful long term employment for adults with PWS.
The present system of disability employment support does not have the flexibility to respond to the complexities of the disability or to the support needs of peak transition points when more intensive support is required.
The reasons for this are many and varied but the DES program at present does very little to reverse the poor employment statistics of the PWS adult population.
The discussion papers identify several key areas that PWSA believe need urgent reform:
Improving the participant’s choice and control:
Driving greater competition and contestability in DES:
● The present “one size fits all “approach does not allow the participant to access the support they need to get a job placement.
A typical scenario at a DES provider involves the production of yet another resume, many meetings where the participant has very little active investment in discussing where their strengths or initiatives tend to be or goals of which type of work they are interested in .The meetings invariably ended with the invitation to access the provider’s computers to look for positions on Seek.com -a task that is rarely productive without active support.
It is debatable if many productive job placements result from such experiences.
● It is imperative that the participant with PWS has a greater choice of providers. The participant with PWS should confidently expect that the person they select to provide the employment support has an understanding of the complexity and characteristics of PWS that includes at least the following :
● Challenges around food security
● Interviews and formal assessments may give a very misleading indication of the person’s real capabilities.
● Communication problems – poor auditory processing skills makes it difficult to follow verbal instructions
● Reduced executive functioning inhibits problem solving
● Difficulties with strenuous work due to poor muscle tone
● Difficulties coping with stress and anxiety in the workplace when things don’t go to plan
● Poor temperature regulation means that some workplace which involve working in extreme hot or cold conditions are unsuitable
● High pain tolerance may make some tasks a high safety risk
● Overriding need for consistent structure and routine
● Easily fatigued – due to reduced muscle bulk, low muscle tone and sleep apnoea
● Small physical stature and small hands and feet, in those who have not been of growth hormone, may make some tasks physically challenging

The information the providers garner about PWS will inform the way the way they interact with the participant with PWS and also guide their choice of suitable job placements. This will improve the quality and quantity of support they provide which will in turn lead to better on going employment outcomes.

The providers should be given direction to know where they can readily access up to date and relevant information about PWS.
Ignorance and lack of knowledge about the disability by the providers has in the past contributed to the poor employment outcomes for our adults who have PWS. The new model of DES should inject greater competition and contestability in DES. The providers that go the extra mile and familiarize themselves with information about characteristics of PWS and behavior management skills should be acknowledged and rewarded.
There should also be a greater choice of approaches to tackling the up skilling of participants so that they are ready for long term job placements.
● Many overseas disability employment support programs such as “Discovery” and the “Ticket for Work” program (if funded adequately) provide useful avenues for upskilling and job readiness
● Transition to work should be seen as a series of work experiences /work placements involving support staff, not just a series of meetings
● Ideally this skill building should start well before the participant leaves school. Again transition to work under VECAL programs should be seen as a continuum of the DES process and funded adequately
● There also has to be recognition that if there is a change in employment circumstances for the participant then a similar level of support is required to transition to a new work placement

Aligning financial incentives to support better employment outcomes:
● The new model of DES must review the timeline for the payment of financial incentives for providers who are supporting participants who have PWS
Under the present model the person who is providing the disability employment support is very attentive during the initial period but once the period of time lapses for financial incentives the level of assistance actually delivered decreases significantly yet the person who is being supported is still expected to attend all the scheduled meetings only to find there is no new information about job placements or work readiness up skilling.

● Aligning incentive payments to successful employment outcomes would remove the incentives providers have to “cherry pick” participants who are easier to place and push participants who have more complex needs of support to the back of the queue or in some cases off the radar completely.

Improving the gateway and assessment process
Concerns around the effectiveness and efficiency of ESATs and Job Capacity Assessments (JCAs).
There is a high risk of overestimating the capabilities of a person with PWS. This can lead to inadequate service support and a decline in the participant’s mood, health, safety and wellbeing when more is expected of them than they are capable of appropriately and safely delivering. People with PWS respond well to consistent boundaries and a person of authority on whom they can rely on for support, direction and reference. The more the assessors know about PWS the more effective the work capacity assessments will be. At present the job capacity assessment does not give an accurate measure of the support needs due to the narrow parameters of the assessment. The best results are achieved by actually assessing the person on the job in work experience placements. This should lead to more realistic assessments of the amount and type of support required which will in turn lead to better employment outcomes long term.

Assistance in the workplace
● The stark reality is that participants with PWS take longer to find suitable job placements. The more intense levels of support need to be in place for longer periods of time than with other disabilities. Adults with PWS are totally routine driven and establishing a new routine is a very challenging time and requires substantial on going levels of support. Once new workplace routines are consolidated and the environment in which they are working is safe and supportive, PWS adults are typically very loyal, reliable and conscientious employees who are keen to please.
● However, if there are changes to staff or routines at the workplace, support may have to be reintroduced for a period to ensure employment continuity
The lack of awareness of employers and those who support them in the workplace to understand the importance of providing a PWS specific work environment and appropriate support is often a major contributor to work placement failure. The employers or workplace mentors should be given direction to know where they can readily access up to date and relevant information about PWS in the workplace.

Building Employer demand.
Success builds on success. If employers can see other instances where workplace environments are modified to become PWS friendly and staff education and mentoring about PWS becomes the norm not the exception then more will be prepared to put their hand up to employ adults who have PWS.
In a tough employment market it is the positive stories that have to be told not the negative. The employers should be able to access programs & training where they can learn how best to support employees with PWS in the workplace prior to the person starting.
We agree the present model of DES is not able to deliver the best outcomes for all – if the goal is to produce best employment outcomes for all disabilities then the new model will have to be more flexible and more robust to meet the demands of the workplace and the needs of the participant. To do that there has to be a rethink of the rather rigid “one size fits all” model. There has to be a wider choice of providers and the support providers need to have disability specific knowledge and skills relating to the support they are meant to be providing.

In summary, the PWSAA:
• Represents job seekers who have a cognitive impairment(and other problems). A person with a cognitive impairment does not have the capacity to take advantage of a competitive market place. As such, any job provider must also consult with the job seeker’s (client’s) key family supporter/advocate who helps with provider performance monitoring and supports the client with decisions on how the funds are spent
• Has found big problems with the current remuneration model for providers. It seems weighted to give providers an incentive to do sign-ups and job preparation activity, but having got that payment, they can’t then be bothered with more labour intensive job placement and job maintenance activity
• Supports more competition in a geographic area to reduce complacency by providers, but this must be accompanied by easy visibility of provider performance and ease of changing provider
• Is very dissatisfied by not knowing how many hours of one-to-one and group support the client is entitled to.
• Wants a great job plan PLUS a provider service level agreement per client. This should state what the provider will do to get and assist with actual job interviews (eg identify vacancies, transport to interviews) then maintain the client in a workplace. Service hours and types must be given to the client (eg minimum two full day’s orientation, then, 1 hour meeting per week, plus on call for any day to day hiccups). The key supporter needs to be able to monitor a provider’s performance on behalf of the PWS job seeker (in case under-servicing or bulk servicing occurs as has been experienced already) and make sure the contracted services are delivered
• Strongly recommends that relevant staff in employment services educate themselves about the complexity of PWS and take a role in educating potential employers as well
With the assistance of NDIA the PWSA has produced a range of information brochures that can be readily downloaded from its website www.pws.org.au
Thank you for this opportunity to submit a contribution to this review of the DES model on behalf of adult PWS participant

Appendix 1
Response from PWSAA for cognitively impaired people with Prader-Willi Syndrome to
DSS ‘New Disability Employment Services from 2018: Discussion Paper’

DSS DES Question PWSAA response
1 Should people who take part in DES be required to go to face-to-face meetings?
Yes. Otherwise, the provider won’t get to know them properly
2 Should DES have a minimum number of available:
• contacts
• hours of support?
Yes to both. This should be specific to the individual (see Q3)
3 Is this something that should as part of the Job Plan and agreed between:
• the DES provider
• the person taking part?
Separate to job plan and documented in a Service Level Agreement so the provider can be held accountable.
4 How can we make sure people are involved in the development of their Job Plans?
Include the client’s advocate, family supporter or nominee in the service
5 What information would you like to know about DES providers in your area if it was available:
• online
• through a smartphone app?
• Are they registered DES provider?
• Are all staff trained to minimum of …. For the recruitment officer and the onsite ‘skills building coach’
• All staff have passed a Police Check and not on the The Disability Worker Exclusion Scheme register or similar
• Any complaints against the provider
• Ratings by service users (like Trip Advisor)
• Success rates at each time interval as a percentage of all their clients
• Success rates in comparison with all other providers offering the same services in the scheme
• Area they cover
• Credentials of the assigned individual provider
• Any employers the provider referred to which have a pattern of ‘revolving door’ with employee placements turning over
6 If you were given more say in how money is spent on you, would you know what to spend it on?
No. People with PWS do not have the capability to make use of a competitive provider environment to their own advantage. They need major support to understand money, service objectives and manage a contract with a service provider
7 If not, what information or support would you need to help with this?
Jobs service provider must work with the client’s advocate. Service descriptions, hours recommended for outcome goals, cost per hour of individual assistance, group sessions, and on site in workplace.

8 Would you like DES providers to focus on getting you:
• a long-term job?
• short-term jobs?
Long term. Constant changes do not suit this disability
9 Did you find it easy or difficult to access DES, such as the registration and assessment process?
10 If you found it difficult:
• what didn’t you like?
• how could it be improved?
Information too vague. Provider did not try to understand the disability. Must be much more specific, about the minimum services on offer, and client-specific service package especially after signing on
11 If a participant chooses not to tell their employer about their disability, how should DES providers assist them in the workplace?
That would be close to impossible with PWS. The behaviours need a supportive employer or the placement will quickly break down.
12 What should the provider do to assist if a person’s job is a risk due to their:
• disability?
• injury?
• health condition?
Don’t place a person with PWS in a job where the risk is too great. Educate the person with PWS and their advocate about other options
Other PWS clients have had bad experiences with providers:
Client must not be penalized for failure.
Client must not be threatened with financial loss or loss of job support access for non-attendance. A clear ‘separation’ process must be transparent to the client up front.
Client must be treated with patience and as an individual