Lack of financial modelling for complex support needs in Supported Independent Living

Committee Secretary

Joint Standing Committee on the National Disability Insurance Scheme

Department of the Senate

PO Box 6100

Parliament House

CANBERRA ACT 2600

AUSTRALIA

Email: ndis.sen@aph.gov.au

Inquire into and report on Supported Independent Living (SIL)

Introduction to Author

Ross M Fear, 50 year career in disability, mental health, community health, community welfare and university lecturing. Currently and past 13 years Editor of the Global Gazette Disability email newsletter with subscribership of 26,800 people in the disability sector. Radio Announcer/Producer with Alive 90.5 fm (North West Sydney).

Current NDIS Transition Manager & Manager Staff Education & Training for a private NDIS Service Provider

employing around 300 specialist Disability Support Workers operating community group homes under NDIS SIL

funding, and NDIS Daily Support and Community Access Support Services across Sydney Metropolitan area. And

providing Registered Mental Health Nurses to specialist mental health services and Justice Health.

Formerly involved in the establishment of the first community group home for people who have a disability in the history of NSW in the early 1970, author of the first NSW State government published guideline on establishing community living for people with a disability in the mid-1970s, piloted Individual Planning approach when Western Met regional adult & adolescent disability assessment coordinator, early 1980’s part of the NSW State Government Team coordinating the NSW state-wide social policy reforms in disability and mental health services as a Senior Policy Analyst and State Staff Training Manager. When we purchased houses across NSW in every region to establish community group homes. Had input into the state financial modelling for group home budgets, input into the state Industrial award that created the industrial designation of Care Workers (formerly disability services were staff by nurses), input into the first published NSW state government Policies for Developmental Disability Services, and Guidelines for the Operation of Community Group Homes. Then University Senior Lecturer in Disability, Community

Health, Mental Health, Health Informatics and Health Management. Later Area Manager Community Health, then

NSW FACS Area Manager - Assistant General Manager Southern Region for state disability services, child protection and welfare service and community welfare funding and licensing before moving to the NGO and private sector Management roles.

In the first decade of my career ran various specialist program units for people with a disability, lived in a group home with four house mates who had an intellectual disability, and did community outreach for people with a disability and families. Professional university qualifications (4x) in teaching, adult education, educational administration, organisational development, also Registered Mental Health Nurse, Registered Disability Nurse, Diversional Therapist, Behaviour Program Officer, former Clinical Nurse Consultant: Disability, Mental health and Behaviour Therapy.

Supported Independent Living (SIL)

The BIGGEST FLAW of the SIL tool is that it is NOT financially modelled properly for the operation of community accommodation services, let alone services for:

(1) people with complex support needs due to severe behavioural disorder secondary to life-long chromosomal mutation disorders, brain injury or neurological irregularities that leader to intellectual disability, autism, OCD, anxiety disorder, sleep disturbance, other psycho-social disabilities / mental health conditions and manifest aggressive, sometimes explosive behaviour disorders (sometime directed at staff, others and/or property damage or self harm) that require intensive behaviour support 24/7 from a team of specially experienced and trained staff who can work in a coordinated and consistent way to implement Behaviour Support Plans, Life Enrichment Plans, Special Health and Other Care Plans, and there is a requirement for crisis/critical event on-call back-up support (that the NDIS does NOT fund or subsidise yet the state did). There is an issue for the safety and wellbeing of the participant, other co-resident participants and support staff who sometimes get assaulted by these participants when in a rage state that can last for some hours. They however, do provide for Behaviour Consultant on an annual Plan review and development basis but not day to day support and they are not part of the crisis management. These participants need supported transport for daily life enrichment activities and appointments which the NDIS SIL does NOT fund or subsidise yet the state did.

(2) people with complex support needs due to severe/profound disability and multiple disabilities and associated high personal care support management on a daily basis 24/7. Some participants have unstable epilepsy, dysphagia (swallowing difficulties - high choking risks), some gastric tube feeding and medication through the tube, neuromuscular disability with poor mobility and high fall/fracture risk needing close 1:1 support, some with visual &/or hearing impairment, some non-verbal and unable to communicate needs, many requiring continence management, management of constipation due to medications and inactivity, administering enamas and suppositories, (wheelchair bound), some have unstable diabetes that requires monitoring and special support, some require frequent suctioning of fluid from the mouth or lungs, some needing nebulisers for breathing difficulties, some need bed to wheel chair transfers, special posturing requirements, applying splits and braces correctly, pressure care, daily physio programs carried out by Support Workers. There is also a need for the Support Workers to have critical issues on-call support (which the NDIS do NOT fund). These participants need supported transport for daily life enrichment activities and appointments which the NDIS SIL does NOT fund or subsidise yet the state did.

The current financial modelling is the same as if the participant was living at home with family, but needed extra hours of care. This is known as the drop in support model. All they offer is extra hours of basic support and not many of the other considerations except clinical assessments in their main Plan.

There is no incentive in the current financial modelling of the SIL to offer or expand accommodation services to people with the greatest need, like those mentioned above. Some organisations in NSW that had long standing community accommodation services for people with disability have ceased offering those services entirely, such as Wesley Disability Service and Anglicare Disability Service. They withdrew from the market place, as the SIL is not financially viable. Is the SIL financial modelling having the unintended consequence of driving service providers out of the market, thus undermining the government’s NDIS program. The problem is not the NDIS staff trying to make it work, it is with the original financial modeling and ignorance of the overall management of critical community accommodation service for people with disability with the highest needs.

The National Disability Services (NDS) (National Sector Association for service providers) Acting CEO, David Moody, warned that if the sector experiences market failure, the NDIS could collapse, leaving almost half a million Australians with disability without services.

According to research conducted by NDS:

 1 in 10 disability service providers have discussed closing  28% of service providers made a loss or deficit; and  more than half (54%) of Australian disability providers say they will have to reduce the quality of services under the current pricing model.

“Our members helped lead the campaign for the NDIS and we continue to support it 100 per cent as a vital reform for Australians with disability,” Mr Moody said. “However as a direct result of the way the NDIS is being administered,

more than half of our members have foreshadowed they will reduce the quality of services unless NDIS pricing better reflects the cost of actually delivering services.” Check out the full article here.

The great threat to disability service quality and safety is the NDIS, not funding what the state government funded as essential measures needed to operate an adequate Supported Independent Living Service (independent of parents and family, however maybe totally dependent of specially trained support staff).

The state, when funding community living services knew what is needed as they also were a direct community accommodation service provider. The NDIS is only funding a part of the service, sure the major part, but the other aspects are also important, yet excluded by the NDIA.

The problem is compounded by huge gaps in funding from state funding ceasing and the NDIS to get around to funding the community group homes that transferred from the states program and still some services are yet to be resolved on this issue.

As well as underfunding the initial SIL services in the first year and then these underfunded services becoming the benchmark expectation of the NDIA for subsequent years funding.

WHAT IS MISSING from the essential implications of offering and operating an intensive high support

accommodation service, AND WAS RECOGNISED AND FUNDED BY THE PREVIOUS STATE FUNDING PROGRAMS, and

that money has now been given to the NDIS BUT NOT FUNDED BY THE NDIS SIL PROGRAM. (It is noted that a big part of the NDIS Budget actually comes from the funds the States Disability budget that transferred from the state to the NDIS).

Firstly and generally, The NDIS do not fund Supervision (Clinical Governance Quality Monitoring and Assurance systems and measures) of direct service provision either in Supported Independent Living nor for In-Home Support yet these systems were part of the previous State funding models (in the state money given to the NDIS)

Dedicated specialist transport with trained staff - vehicle, modifications and running costs beyond client transport allowance and clients ability to pay. e.g. unfunded group home car with driver safety shield, group home or day program van or mini-bus with wheelchair hoist and clamping, or with client separation safety shields.
Overlap Transporting. Transporting in peak hour city traffic. By group home staff and overlapping day program time in the provision of client transport and return of specialist vehicles to base. The staff are entitled under Industrial Awards to be paid for on duty time.
Staff Pre-Shift Formal Training. Cost of Support Worker wages to attend training -specific to client needs, special Programs such as Care Plans &/or Behaviour Support Plans - in respect to those need on the previously.
Staff Induction Buddy Shifts. For onsite introduction to clients and special care routines/ requirements and procedures as they are required on site for high needs and complex clients.
Team Leader allowance. A 24/7 accommodation service supporting clients with rotating shifts, casual and agency staff, needs an onsite Team Leader to provide leadership to ensure consistent implementation of the client programs. The Team Leader needs to be paid at a higher grade level for assuming the additional responsibilities.
On-call allowance. Staff supporting complex and high support needs clients need an on-call person 24/7 who knows the clients individual needs, how to respond to unforseen situations or behaviour. This person need client specific knowledge and capacity to give appropriate professional advice, not a security service, though a security service may also be needed in some cases.
Responsive call on staff, for emergency and incident management. At times there is a need to call on duty additional staff to safely manage crisis situations. These crisis occasions happen at very short notice and require immediate response. The NDIS has no emergency crisis provision for funding. Given that with high needs and

complex clients these will be repeated events in each year - an NDIS budget provision needs to included in the financial modelling for service provision, especially in the SIL tool.

Team Meetings. In order to ensure all team members, who work rotating shifts, are consistent in their implementation in the clients program and up to date on the likely changes in the client support procedures or protocols, there is a need for periodic Team Meetings in order to provide a consistent and quality service. The staff attendance at the meetings needs to be paid as it is work time.
No Gaps Funding. Delays in client NDIS reviews can lead to gaps in funding periods. New NDIS plans should always be backdated to the day after the previous NDIS Plan ended when there has been a continuity of support provided by the Service Provider. This does not always happen and the service provider has paid staff and costs but not been paid by the NDIS.
Regular (Daily or Weekly) Specialist Staff Support. Some clients with high support needs require certain procedures to be carried out by skilled and qualified professionals, that are not generally available through mainstream services, yet under previous State funding there would be consideration of clients and services that needed a qualified Registered Disability Nurse on duty. The NDIS only funds nurse assessments and plans not routine necessities. For example Insulin administration carried out by a Registered Nurse. Insulin injections can lead to death of a client, if not administered by a trained and qualified person following strict clinical procedures. Insulin is not like any other medications administered routinely. Blood sugar reading must always be carried out first, then a clinical judgement made whether it is safe to give. Similarly, any clients on Digoxin, a pulse reading must be taken first, then a clinical judgement made whether it is safe to give or must be withheld. Daily drop-in nursing services are not available in many (MOST) areas, and not available at multiple times a day. Nursing agencies cannot claim from medicare or the state health for these services to people who have a disability. The state Disability Program allowed for costing these needs in the state disability funding (the money given by the state to the NDIS).
Data Collection & Collation. The Team Leader needs time away from client support to collect essential behaviour and other clinical data (such a for epilepsy, diabetes, etc.) and to create summary reports and graphs for Specialist Consultations, and overall program monitoring of the participants well being.
High Needs & Medication Management Staff Training. These areas of training must be carried out by people with appropriate professional qualifications and real world client experience. For the Cert 3 courses the minimum qualification for a trainer is a Cert 3 in the same discipline and Cert 4 in Training, and they give training in medication management, yet they are not properly clinically qualified. This is a serious concern and the qualification is no guarantee of adequate knowledge or skill.
Complex Behaviour Support Staff Training. All staff who work with participants with complex behaviour support needs, must have special training before starting support. Training in the participants Specific Behaviour Support Plan, the Life Enrichment Program, as well as training in a “Positive Approach to Behaviour Support”, “Cris Management” and “Predict And Respond to Threats of Assault and Aggression” (P.A.R.T. Course) (a 3 day course teaching situational assessment and legal response level, crisis communications, redirection, diversion and evasion, blocking and releases). It is hard if not impossible to recruit staff with these skills and knowledge off the street.
Complex Multiple Disability High Dependency Staff Training. All staff who work with participants in this group require a First Aid Certificate, Annual CPR refresher, training in the participants specific care plans such as Epilepsy Care Plan, Diabetes Management Plan, Daily Physiotherapy Exercise Plan, Occupational Therapy Daily Plan, Speech Pathologist Communications Plan and possibly basic sign language, Feeding Plan, Tube Feeding Plan and Safety,

Nutrition, Basic Meal Preparation and Hygienic Food Handling and Storage, Lung and Oral Suctioning Techniques,

Proper Use of A Nebuliser, etc. depending on the participants specific needs. It is hard if not impossible to recruit staff with these skills and knowledge off the street.

Property Repairs after damage by Participants with behaviour disorders. The cost of repairs over a year can be more than the participant has available from their Disability Support Pension after routine Board & Lodging Fees and pharmacy costs and clothing and personal care and toiletries items purchased from the pension. A Service Provider cannot leave unrepaired broken windows, hole kicked or punched into walls and doors, other items of furniture, fittings and appliances smashed by a participant during a major behavioural outburst, which be weekly events, if not more frequently.

The previous State Government used to take all these factors into consideration when funding community accommodation services, for people who had critical and intense support needs. These are absent from the SIL financial modelling.