Disability Care and Support
Public inquiry
How a scheme should be designed and funded to better meet the long-term needs of people with disability, their families and carers:

Parent: “I just want to be able to make concrete plans for the future for my daughter who is 14.  I would like to be able to put her name down for accommodation and know with a fair amount of certainty that this is likely to happen sometime in the future. I don’t want to get to her being 20+ and then not having somewhere for her to live.  This seems like a real gap is services.”
Parent: “Accommodation in long term; Recreation and exercise programs to continue; Respite needed:  short term; on demand; give carer a well-earned break.”
Family member: “Easier pathways to obtain respite/information re holidays available, financial availability for support in respite/holidays; provide more taxi vouchers; on call carers in emergencies.”
PWD “Provide more equipment and staffing for service providers; provide more training on health, e.g. asthma to the community”
Parent: “I need to know that when I am no longer able to care for my disabled children they will get the kind of care they need (at the moment there is nowhere I feel would look after them in the way they are accustomed to).”
Parent: “There are not enough qualified and responsible administrators in aged or disability fields to successfully carry out its jobs in these growing industries. People are living longer both, PWD’s and aged and training courses should be doubled NOW to cater for the growing industry.”
Parent: “Hostel type accommodation should be offered where PWD’s have their own space and qualified and trained staff to care for their needs. Quality of care to be closely monitored as a person with an intellectual disability, in a lot of cases, cannot stand up for themself.” 
Support worker “Government funding needs to increase in NSW. There needs to be more respite available to carers. Disability service operators need more funding to provide additional “grassroots” services.”     
Support worker:   “Funding to expand our vocational, residential and respite services on the Central Coast. More funding to deal with dual disabilities and more behavioural specialists.”      
Support worker: “More support services for carers – social workers; more respite for families; more aged care facilities for PWD’s; more residential services for PWD’s in their adult years.”
Support worker: “Have a service that other service providers may approach to obtain industry relevant training on e.g. staff development days.” 
Support worker: “Have a means on keeping PWD’s and their stakeholders abreast with what support is available.”
   
How to determine the people most in need of support, the services that should be available to them, and service delivery arrangements:

Parent: “Individual assessments for clients needs. High support will require higher funding.”

Parent:”Draw up individual care plan which covers all areas, e.g. budgeting, meal prep; personal care; cleaning; shopping; recreation; medical, all dependent on client capability. Parents/advocates to be included in planning process.”

Parent: “There should be greater accountability by service providers. Money is being wasted, unfairly distributed and on a first come first served basis.”

Support worker: “Families (of PWD’s) should be allocated a case manager who will advocate for them and guide them through the services that are available. At the moment services go to those “in the know” and are not fairly distributed. At the moment carers aren’t given enough support or information.”

Support worker: “Have a one stop shop” to which parents/carers/PWD’s/service providers may go (e.g. CCDN) for information about how best to access services/funding. Advertise this “one stop” service through e.g. Centrelink.

Support worker: “Have a means of shortcutting processes in urgent need and ensure stakeholders know about this service and what the eligibility criteria are.”
 
The costs, benefits, feasibility and funding options of alternative schemes:
Parent: “Have individual accounts. Draw up weekly, quarterly and annual budgets.”

Parent: “Pay the carer; Funding to be given to the carer so carer can source their own respite; all monies and to be receipted and accounted for.”

Support worker: “I would like to see all carers receive an amount of money to spend on respite and equipment each year. Spending to be receipted and audited.”

 How the scheme will interact with the health, aged care, informal care, income support and injury insurance systems:
Support worker: “there needs to be greater connectedness between all services and clients, particularly those living at home.”
 
Its impacts on the workforce:
Support worker: “At present workplaces are finding themselves in a compromised position. There are demands for businesses (rightly so) to run on a competitive basis with high productivity expected of service users. This is compromised as there are no/not enough alternative services to which to refer clients no longer suited to the workforce.”
 
How any scheme should be introduced and governed:
Parent: “Each carer to put in a submission for funding requesting respite periods. If not used in time allocated, funding NOT to be withdrawn.”

Parent: “It would be good to start care while PWD’s are still in parents’ home, maybe stay in the family home (when parents pass on), with as much care as needed. Parents nominate person to oversee and adjust if and when required. The scheme should be a whole package, i.e. all levels of care taken into account whether it is personal care, cooking, washing/cleaning, recreational, shopping, budgeting, transport, appointments, assist with all affairs and their lives.”

Support worker: “Through a Centrelink based department with adequate staffing and links to ALL services available. A one stop shop for information, with a directory of all local services and what they offer.”
 
What protections and safeguards should be part of the scheme?
Parent: “Clients to have regular reviews – including PWD’s living at home – as as clients age their needs change, therefore their care changes. One should have the ability to choose providers and/or carers. Clients are vulnerable an in many cases cannot speak up for their rights.”

Parent: “Providers must be accredited and pass all regulations required to care for people with an intellectual disability.”
 Support worker: “Receipts would need to be provided for the services received, e.g. respite, to avoid abuse of the system.”

Thank you for providing the opportunity for us to “have our say.”
WENDY MILLS
LEARING AND DEVELOPMENT OFFICER
PACIFIC COPACK (a division of FAIRHAVEN SERVICES LIMITED)