Our Ref:LR:SVT:2013
29 January 2013
Committee Secretariat
Senate Standing Committee on Community Affairs (Legislation Committee)
P O Box 6100
Parliament House
CANBERRA ACT 2600
Email: community.affairs.sen@aph.gov.au
SUBMISSION TO INQUIRY INTO
THE NATIONAL DISABILITY INSURANCE SCHEME BILL 2012
Cairns Community Legal Centre Inc Incorporating
1st Floor Main Street Arcade Disability Discrimination Legal Service
85 Lake Street (PO Box 7129) Phone: (07) 4031 7358 or 1800 650 197 Cairns Q 4870 Phone: (07) 4031 7688 Seniors Legal and Support Service Fax: (07) 4041 2134 Phone: (07) 4031 7179 or 1800 650 931
Recommendations: ………………………………………………………………………………………………… 4 Introduction ………………………………………………………………………………………………………….. 7 Background to the Cairns Community Legal Centre Inc (CCLC) …………………………….. 7 Our interest in the consultation ……………………………………………………………………………. 7 Insurance approach ………………………………………………………………………………………………… 7 Rules ……………………………………………………………………………………………………………………. 8 Focus …………………………………………………………………………………………………………………… 8 Choice and control …………………………………………………………………………………………………. 9 Principles ………………………………………………………………………………………………………….. 9 Rural and remote ……………………………………………………………………………………………… 10 Independent advice …………………………………………………………………………………………… 11 Standards ……………………………………………………………………………………………………………. 11 Privacy, dignity and confidentiality ……………………………………………………………………. 12 Valued status …………………………………………………………………………………………………… 12 Complaints and disputes ……………………………………………………………………………………. 13 Protection of human rights and freedom from abuse …………………………………………….. 13 Access request …………………………………………………………………………………………………….. 13 Assessment …………………………………………………………………………………………………………. 14 Assessment/examination …………………………………………………………………………………… 14 Assessment tools ……………………………………………………………………………………………… 15 Inventory for Client and Agency planning (ICAP) ……………………………………………. 15 Functional Independence Measure (FIM) ………………………………………………………… 17 Specialist Disability Assessment …………………………………………………………………….. 17 Reasonable and necessary supports ………………………………………………………………………… 18 Supports funded by the NDIS ……………………………………………………………………………. 18 Supports not funded by NDIS ……………………………………………………………………………. 19 Participant’s plan …………………………………………………………………………………………………. 19 Managing funding for supports ……………………………………………………………………………… 21 Nominees ………………………………………………………………………………………………………… 21 Acquittal of NDIS amounts ……………………………………………………………………………….. 22 Compensation payments ……………………………………………………………………………………….. 22 Notices ……………………………………………………………………………………………………………….. 23 Conclusion ………………………………………………………………………………………………………….. 24 Attachment A ……………………………………………………………………………………………………… 25 FIM Assessment ………………………………………………………………………………………………….. 25 Motor Control ………………………………………………………………………………………………….. 25 Self-care ………………………………………………………………………………………………………. 25 Sphincter Control …………………………………………………………………………………………. 26 Transfer ………………………………………………………………………………………………………. 26 Locomotion …………………………………………………………………………………………………. 27 Cognitive Items ……………………………………………………………………………………………….. 27
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Communication ……………………………………………………………………………………………. 27 Social/Cognitive …………………………………………………………………………………………… 27
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Recommendations:
Recommendation 1: That the activities to be funded as reasonable and necessary
supports include those relating to physical, social, emotional and intellectual
development.
Recommendation 2: That the eight key principles relating to choice and control be included in the Act: choice (maximise opportunities for people with disability to plan and design their support arrangements) control (over how much control they want over their funding, supports and service providers, and able to change this control over time) presumption of capacity (with the right support, capacity to exercise choice and control) design (each part of the system is designed to ensure people with disability have maximum choice and control) minimum intervention (in the least intrusive way) minimum restrictions (any restrictions on choice and control should be minimal and evidence based; clear information to be provided which is transparent and easily understood) inclusion and flexibility (decisions about support and how they are managed should be inclusive and flexible as a person requires; should include anyone else the person wishes; should be revised as a person’s needs change) dignity in risk (people with disability should be allowed to determine their own best interests, make mistakes and learn from those mistakes so long as the person, or others around them, or their support arrangements are not put at significant risk and public resources are not wasted)
Recommendation 3: That the Objects of the Act in section 3 include that people with disability will access reasonable and necessary supports on an equitable basis.
Recommendation 4: That the general principles in section 4 include that where people with disability meet the access criteria for participating in the NDIS, they will not be disadvantage or discriminated against because of their place of residence.
Recommendation 5: That the Act impose a positive duty on the Government and its host jurisdictions, to fund and provide identified supports in areas which currently lack them.
Recommendation 6: That in addition to providing advice and assistance to
participants to manage their support plans, the NDIS provide general support by referring participants to relevant outside agencies or providers for independent advice.
Recommendation 7: That the Act include a requirement of compliance with
Information Privacy Principles, and include those Principles in a Schedule.
Recommendation 8: That the Act require the Agency and associated persons to ensure that applicants and participants are treated with respect and dignity in all aspects of their lives.
Recommendation 9: That the Act include a requirement that each participant be given the opportunity to develop and maintain skills and to participate in activities that enable them to achieve a valued role in the community.
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Recommendation10: That the Act include an accessible and accountable process to resolve participants’ complaints without fear of retribution.
Recommendation 11: That the Act require the Agency and associated persons to take all practical and appropriate steps to prevent abuse and neglect of participants, and to uphold the legal and human rights of participants.
Recommendation 12: That the Act impose a duty on the CEO to take reasonable steps to provide assistance to persons requesting access to comply with lodgement provisions.
Recommendation 13: That the Act make it clear that the following may make requests for access to the NDIS: a prospective participant, on their own behalf a person with parental responsibility, on behalf of the child a formal or informal substitute decision-maker on behalf of the person lacking sufficient capacity an advocacy/support organisation on behalf of a client who is a prospective participant in need of such assistance
Recommendation 14: That the CEO be responsible for arranging and funding any assessment or medical, psychiatric or psychological examination required to decide whether assess requirements have been met or to approve a participant’s plan.
Recommendation 15: That the Rules prescribe a range of assessments by suitably qualified professionals to determine level of functional capacity and supports needed to participate in the economic and social life of the community.
Recommendation 16: That the Act provide greater clarity as to what will be considered ‘reasonable’ with respect to supports for participants.
Recommendation 17: That the Act proscribe subjecting families and other providers of unpaid care to undue pressure or duress in order to maximise their contribution to caring for the participant.
Recommendation 18: That where the Rules identify supports which will not be funded by the NDIS, the Agency is to provide general support to participants to assist them to access those supports from outside sources.
Recommendation 19: That the process for reviewing participants’ plans be clarified so that a decision by the CEO not to conduct a review of an existing plan, results in automatic approval.
Recommendation 20: Alternatively, that the process includes a simplified means to vary statements of participant supports, as well as replacement of those statements.
Recommendation 21: That the NDIS make specific provision for emergency full-time support to be provided without diminishing the long-term support established in the statement of participant supports.
Recommendation 22: That section 43 be amended to make it clear that if a plan nominee has not been appointed, the participant may request management of funds by the participant, a registered plan management provider or the Agency.
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Recommendation 23: That sections 86 and 87 be amended to allow for a substitute decision-maker, whether formal or informal, to apply for appointment as plan and/or correspondence nominee.
Recommendation 24: That the Rules set limits on costs for administrative functions in service delivery, and provide guidelines regarding level of support to be provided.
Recommendation 25: That Part 1 of Chapter 5 (Requirement to take action to obtain compensation) be deleted in its entirety.
Recommendation 26: That the penalty in sections 57 and 189 be set as maximum penalties, and that the penalty in section 84 be reduced and set as a maximum.
Recommendation 27: That section 84(8) making the failure by a plan nominee to comply with the Notice on offence of strict liability, be deleted.
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Introduction
Background to the Cairns Community Legal Centre Inc (CCLC)
The CCLC is a non-profit, community based organisation run by volunteers and paid
workers with Commonwealth and State Government funding to assist socially and
financially disadvantaged persons in Far North Qld with various legal problems and issues they face. It offers free legal services in the areas of criminal law, traffic matters, family law, civil law (including motor vehicle accidents and debt recovery matters), consumer complaints, employment law, discrimination work (other than disability discrimination), neighbourhood disputes, bankruptcy matters and other miscellaneous matters.
The CCLC offers other free legal services in addition to the cores service above.
The Disability Discrimination Legal Service provides legal advice and case work which relates to disability discrimination complaints under the Federal Disability Discrimination Act 1992 (DDA) and the Queensland Anti-Discrimination Act 1991 (Queensland Act).
The Seniors Legal and Support Service offers legal and support services for the benefit of seniors affected by elder abuse or financial exploitation.
Family Law Service offers legal services in relation to family law matters which involve children’s issues.
Consumer Law Service offers legal services for consumers in relation to a range of consumer law matters including credit and debt matters, disputes about consumer products and services, bankruptcy matters and other consumer law matters.
Community education and awareness-raising activities as well as law reform work are important aspect of all the services.
Our interest in the consultation
Our client base is amongst the most vulnerable in society and we make submissions to protect and expand the protections of their human rights.
We made submissions to the National Disability Strategy in 2008 and the Productivity Commission Inquiry into Disability Care and Support in 2010.
We commend the Government on bringing about this ground-breaking scheme to provide certainty of adequate support for people with significant disabilities and their families, and we welcome the opportunity to make a submission on the legislation for the National Disability Insurance Scheme (NDIS).
Insurance approach
We commend the Government on adopting an insurance approach to the provision and funding of supports for people with disability to ensure adequate investment in their needs.
We note that currently the Queensland government’s approach is to allocate available resources (currently lowest per capita) in accordance with a person’s assessed needs and
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their priority ratings, noting that eligibility on its own does not confer access to specialist disability services.
However, the NDIS first identifies necessary and reasonable support needed (in
participant’s plans), then commits to managing funds to purchase that package of support. It does not make the provision of support directly dependent on resources (even though the scheme is to be sustainable).
As we understand the NDIS will operate, the responsibility of all levels of Government for sourcing funding for the scheme, through a levy or otherwise, is not meant to impact on the actual support which people with disability will be able to access.
Rules
We note that the Rules to be associated with the Act governing the NDIS have not been drafted as yet. They cover extensive areas which are important to participants and their families.
It is difficult therefore to make informed comment on the various issues as they may impact on people with disabilities and their families, without these draft Rules giving substance to the legislative provisions.
Currently the Rules will address: assistance for people with disabilities access requirements relating to age and residence assessing disability requirements assessing early intervention requirements reasonable and necessary supports general supports registered providers decisions and duties relating to children duties of nominees appointment of plan nominees payment of and managing funding for supports review of participant’s plan temporary absences disclosure of information by CEO recovery of compensation for personal injury debt recovery
In any event, we provide comment below on the material provided (the draft Bill).
Focus
In section 4, the first general principle guiding actions under the proposed Act recognises the right of people with disability to realise their potential for physical, social, emotional and intellectual development, whereas the second general principle relates to support only to participate in and contribute to social and economic life to the extent of the person’s ability.
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In section 14, the Agency may provide funding to others to assist people with disability to realise their potential for development in those specified areas (though not to participants directly), as well as to participate in social and economic life.
We note that the disability requirements and reasonable and necessary supports focus only on a participant’s social and economic participation, not on their personal development in physical, social, emotional and intellectual areas.
Our query is why activities relating to the important goal of that multi-faceted
development have been omitted from those which may be supported and funded by the NDIS.
Recommendation 1: That the activities to be funded as reasonable and necessary
supports include those relating to physical, social, emotional and intellectual
development.
Choice and control
Principles
We note that the material provided states that at the core of the NDIS will be: a lifetime approach choice and control social and economic participation focus on early intervention
We note that the Act will have general principles guiding actions under the Act in section 4, and specific principles relating to participants’ plans in section 31.
However, the important aspect of choice and control is left to be referred to simply in the Act as ‘enabling and supporting people with disability to exercise choice and control in the pursuit of their goals and the planning and delivery of their supports’. It does not indicate any intention of including this aspect in the Rules to accompany the Act.
The NDIS factsheet on choice and control within the NDIS sets out eight key principles to underpin choice and control, relating to: choice (maximise opportunities for people with disability to plan and design their support arrangements) control (over how much control they want over their funding, supports and service providers, and able to change this control over time) presumption of capacity (with the right support, capacity to exercise choice and control) design (each part of the system is designed to ensure people with disability have maximum choice and control) minimum intervention (in the least intrusive way) minimum restrictions (any restrictions on choice and control should be minimal and evidence based; clear information to be provided which is transparent and easily understood) inclusion and flexibility (decisions about support and how they are managed should be inclusive and flexible as a person requires; should include anyone else the person wishes; should be revised as a person’s needs change)
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dignity in risk (people with disability should be allowed to determine their own best interests, make mistakes and learn from those mistakes so long as the person, or others around them, or their support arrangements are not put at significant risk and public resources are not wasted)
In our view, these key principles are crucial to the whole purpose of the NDIS and should be included in the Act. The Rules will address how choice and control should operate
(access, assessment, planning, managing funds and review of plans to reflect a
participant’s changing needs), but the Act should set out the principles guiding that process.
Recommendation 2: That the eight key principles relating to choice and control be included in the Act: choice (maximise opportunities for people with disability to plan and design their support arrangements) control (over how much control they want over their funding, supports and service providers, and able to change this control over time) presumption of capacity (with the right support, capacity to exercise choice and control) design (each part of the system is designed to ensure people with disability have maximum choice and control) minimum intervention (in the least intrusive way) minimum restrictions (any restrictions on choice and control should be minimal and evidence based; clear information to be provided which is transparent and easily understood) inclusion and flexibility (decisions about support and how they are managed should be inclusive and flexible as a person requires; should include anyone else the person wishes; should be revised as a person’s needs change) dignity in risk (people with disability should be allowed to determine their own best interests, make mistakes and learn from those mistakes so long as the person, or others around them, or their support arrangements are not put at significant risk and public resources are not wasted)
Rural and remote
The factsheet on choice and control recognises that in order to exercise choice and control people need access to a supply of support and service options, which may not be the case in rural and remote areas. It goes on to suggest that the NDIS will need to consider options to increase choice by encouraging services and developing the sector.
In many rural and remote areas, it is not a case of having insufficient options; rather it is the case of not having any options at all, not even an ‘only’ option.
Although the Act refers extensively to the Chief Executive Officer (CEO) of the NDIS Launch Transition Agency (Agency), we considered long term aspects of the NDIS, not just issues which may arise during the launch.
We therefore consider that the federal government and its host jurisdictions should have a positive obligation to ensure that supports are available to all participants equitably. The NDIS would fail to attain its objects if approved participants have no access to necessary supports.
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In our view, if reasonable and necessary supports are not currently available in a particular socioeconomic or geographic area, the Agency should have authority to bring such systemic deficiencies to the attention of the Minister, and to have those deficiencies remedied within a reasonable timeframe.
Tenders for new contracts for funding of service provision can include a requirement to
service particular rural and remote areas to cater for identified need. With the
government’s emphasis on having fewer, larger service providers, this should not be a problem. Existing service provision contracts can be renegotiated to provide that same service.
Recommendation 3: That the Objects of the Act in section 3 include that people with disability will access reasonable and necessary supports on an equitable basis.
Recommendation 4: That the general principles in section 4 include that where people with disability meet the access criteria for participating in the NDIS, they will not be disadvantage or discriminated against because of their place of residence.
Recommendation 5: That the Act impose a positive duty on the Government and its host jurisdictions, to fund and provide identified supports in areas which currently lack them.
Independent advice
We note that the factsheet on choice and control stated that ‘the NDIS should also provide independent advice, where requested, to help a person manage their plan’.
We could not locate any comparable provision in the Exposure Draft.
In any event, we do not see how advice provided by the NDIS could qualify as ‘independent’.
In our view, in addition to advice and assistance from the NDIS on how to manage plans, participants should also have the right and support to seek truly independent advice from relevant agencies or providers outside the NDIS.
Recommendation 6: That in addition to providing advice and assistance to
participants to manage their support plans, the NDIS provide general support by referring participants to relevant outside agencies or providers for independent advice.
Standards
We note that the only reference to standards in the Act is the quality assurance standards and procedures for registered providers of supports which will be included in the Rules. This will relate in particular to management of funding for supports.
Most of the disability employment standards set out in the Disability Service Standards (FaCSIA)2007 reflect the State Disability Services Standards which aim to enhance the quality of services for people with disability and give them a greater say in the services they receive. Many of those Standards are addressed in the Act: service access
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individual needs decision making and choice participation and integration service management
Those Standards have relevant Key Performance/Service Standard Indicators to assess compliance. They are more than simple principles or aspirations, and are dealt with comprehensively in the Act.
The Act refers to other standards only briefly or not at all.
Privacy, dignity and confidentiality
The State and Federal Standards referred to above recognise and respect the person’s right to privacy, dignity and confidentiality in all aspects of their life. They require compliance with Information Privacy Principles of the Privacy Act 1988 in order to protect and respect those rights. As a government agency, those Principles apply to the Agency.
The Act does address privacy and disclosure of information to some extent (Part 2 of Chapter 4).
In our view, the Privacy Principles should be incorporated into the Act, perhaps in a Schedule, as well as compliance with the Principles being required in Chapter 4.
In addition, we prefer that the Act require the Agency and associated people (including nominees and plan managers) to ensure that participants are treated with respect and dignity in all aspects of their lives (rather than simply having this as a general principle).
Recommendation 7: That the Act include a requirement of compliance with
Information Privacy Principles, and include those Principles in a Schedule.
Recommendation 8: That the Act require the Agency and associated persons to ensure that applicants and participants are treated with respect and dignity in all aspects of their lives.
Valued status
This Standard is intended to ensure policies and procedures provide each person with disability an opportunity to develop and maintain skills and to participate in activities that enable them to achieve valued roles in the community.
In our view, this is more than facilitating the participant’s social and economic
participation. It combines the developmental needs as identified above in
Recommendation 1, as well as focusing on a person’s positive image, belief and ability to make valued contribution to their community.
Recommendation 9: That the Act include a requirement that each participant be given the opportunity to develop and maintain skills and to participate in activities that enable them to achieve a valued role in the community.
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Complaints and disputes
We note that section 73(2) allows for the Rules to make provision prescribing the process for handling complaints involving registered providers of supports.
However, while the Act does set out processes to review certain decisions (relating to access criteria, status as a participant, approval of statement of participant’s support and review of participant’s plan), it does not deal with complaints or disputes generally.
State and Federal Standards encourage recipients to raise, and have resolved without fear of retribution, any complaint or dispute they may have regarding the service provider or the service. It provides an accessible and accountable process for the effective resolution of complaints that all parties understand and have confidence in. Furthermore, it creates
an atmosphere whereby complaints are viewed positively as an opportunity for
improvement.
In our view, the Act should contain such a Standard and process to resolve complaints and disputes.
Recommendation10: That the Act include an accessible and accountable process to resolve participants’ complaints without fear of retribution.
Protection of human rights and freedom from abuse
This Standard requires relevant parties to act to prevent abuse and neglect and to uphold the legal and human rights of service recipients/participants. This is consistent with our
obligations under the United Nations Convention on the Rights of Persons with
Disabilities (CRPD), to which we are a signatory.
In our view, the Act should incorporate more than a general principle that people with disability have the same right as others to live free from abuse, neglect and exploitation. It should contain a clear statement based on current federal Standards.
Recommendation 11: That the Act require the Agency and associated persons to take all practical and appropriate steps to prevent abuse and neglect of participants, and to uphold the legal and human rights of participants.
Access request
We note that the Act requires a person who wants to become a participant to make a request ‘in the form approved by the CEO’. Unless specifically stated to be otherwise, an ‘approved’ form usually means in writing, by completing all relevant sections in a formal application form.
Since the NDIS is to assist people with disabilities ranging from significant to severe and profound, we see two main problems with the stated requirement.
Firstly, the prospective participant (applicant) may not have the manual dexterity to write or type to complete an application requesting access to the NDIS.
Secondly, the applicant may not have the intellectual capacity or cognitive function to understand and complete the necessary application form.
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We note that currently, if a person wishes to make a discrimination complaint to the Australian Human Rights Commission and that person requires assistance to formulate the complaint or to reduce it to writing, it is the duty of the Commission to take reasonable steps to provide appropriate assistance to that person.
In our view, the NDIS should have at least the same obligation to assist applicants to access the scheme.
In addition, if the applicant cannot complete the request for access themselves, their informal/formal substitute decision-maker should be authorised to complete and lodge the request on their behalf.
Another situation where prospective participants may need assistance is where they come to the attention of Courts. Their offending behaviour often arises from mental health conditions and resulting homelessness. Their condition certainly meets the ‘disability requirements’ in the NDIS. In our view, non-government organisations assisting such clients with diversionary programs should also be able to assist them to access the NDIS.
Recommendation 12: That the Act impose a duty on the CEO to take reasonable steps to provide assistance to persons requesting access to comply with lodgement provisions.
Recommendation 13: That the Act make it clear that the following may make requests for access to the NDIS: a prospective participant, on their own behalf a person with parental responsibility, on behalf of the child a formal or informal substitute decision-maker on behalf of the person lacking sufficient capacity an advocacy/support organisation on behalf of a client who is a prospective participant in need of such assistance
Assessment
Assessment/examination
We note that in deciding whether a prospective participant meets the access requirements, the CEO can request that person to undergo an assessment or a medical, psychiatric or psychological examination. The CEO may also request these assessments or examinations in order to approve a participant’s plan (which includes the statement of supports).
The Act does not cover who will pay for such assessments or examinations, or who will arrange them.
It has been the sad experience of several of our clients that the cost and difficulty of obtaining a diagnosis by a relevant specialist is often prohibitive.
For example, in order to be verified as having Autism Spectrum Disorder (ASD) for the purposes of developing an Education Adjustment Program, the child must be assessed (at parents’ expense if they are not willing to suffer a lengthy delay in the public health system) by a registered paediatrician, psychiatrist or neurologist). Often, in rural and
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remote areas, there is no suitable specialist available locally, and visiting specialists when they do come are booked out months in advance.
Such a condition (ASD) is a prime example of where the earliest intervention possible
provides the best outcome. However, current processes often delay the start of
intervention when it is needed the most.
We note that in employment situations and personal injury matters, if a claimed
diagnosis/condition is questioned, the employer or respondent arranges and pays for the
‘independent medical assessment’. In our view, if the CEO is not satisfied with the
information provided by the prospective participant (often supplied by the person’s treating general practitioner), then the Agency should arrange and pay for assessments or examinations which will provide necessary information to enable the decisions to be made.
This will also overcome the problem associated with section 26(3) relating to failure to provide the requested specialist reports within the 28 day time frame as being taken that the access request has been withdrawn. Why should the person with disability undergo a costly and tortuous process to establish the extent of reduction of their functional capacity? In our view, the Agency should assist with this.
Recommendation 14: That the CEO be responsible for arranging and funding any assessment or medical, psychiatric or psychological examination required to decide whether assess requirements have been met or to approve a participant’s plan.
Assessment tools
We note that the Rules yet to be drafted may prescribe the kinds of assessment and who may conduct assessments for the purpose of deciding whether a person meets the disability requirements or the early intervention requirements (for access to the scheme).
The material supplied for the public consultation states that the development of a national assessment framework is a key foundation reform for an NDIS. The work to select, refine and/or develop a suite of tested and validated tools that may be used to assess the support needs of people with disability and allocate resources to meet those needs, is being undertaken as part of the National Assessment Tools Project (the Project)
We also note that although Queensland declined to take part in the State trials of the
NDIS, its disability officials (together with disability officials from Victoria) are
managing that Project, and senior disability officials comprise the Project Board.
Inventory for Client and Agency planning (ICAP)
Currently Queensland uses an Inventory for Client and Agency Planning (ICAP) tool that looks at and reports on four aspects of functional need, and problem or challenging behaviours: motor skills o ability to perform a range of tasks involving mobility, fitness, coordination, eye-hand coordination and precise movements
o assesses ability to complete 18 different motor tasks without help or
supervision such as whether the person could pull themselves into a standing position or assemble objects with 10 small parts social and communication skills
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o measures skill in social interaction, language comprehension and language expression
o assesses ability to independently complete 19 different social and
communication tasks including interaction with others in various settings,
understanding of language transmitted by signs, oral expression,
identifying written symbols, and ability to communicate through verbal expression, signs or written language (for example, to summarise and tell a story so that it could be understood by someone else or write, type or print legible notes or letters for mailing) personal living skills o skills in eating and meal preparation, toileting, dressing, personal self-care and domestic skills o assesses ability to independently complete 21 tasks such as whether they can pick up and eat food such as crackers and load, and operate a washing machine using the appropriate setting and amount of detergent community living skills o measures skills in four areas – time and punctuality, money and value, work skills and community orientation o assesses ability to independently complete 19 different skills essential for community adjustment such as crossing nearby residential streets, roads and unmarked intersections alone and receiving bills by mail and paying them before they are overdue problem or challenging behaviours o assesses whether the person engages in any of eight challenging behaviours
including being hurtful to themselves or others, destroying property,
unusual or repetitive habits, socially offensive behaviour, withdrawal or offensive and uncooperative behaviour o it also assesses how serious each problem is and how frequently they occur
When we requested a copy of the ICAP report for one client, we were advised by departmental officers that the report is apparently incomprehensible to anyone not trained in that process, so that a two page ICAP assessment summary report is produced for internal use and reporting to parents.
Those two pages set out generally what the ICAP assessed in each of the four areas (as detailed above), and summarised that the ICAP Service Level score is a combination of the results of the four functional needs assessment areas and the problem behaviour
assessment. It advised that there are nine levels ranging from intensive to minimal. It
then gave a single sentence stating what the score ‘indicates’ that the child needs.
For a child with Down syndrome and severe Autism the ICAP identified a need for ‘total personal care and intense supervision’ (the highest priority level).
In our view the assessment summary report is of no real value or use in determining the actual supports needed by the person with disability. It does not identify the reasonable and necessary supports required to assist the person with disability to undertake activities which will facilitate their social and economic participation.
We are concerned that Queensland disability officials may present to the Project Board and the Select Council a biased view of the efficacy of using ICAP system for the NDIS. Our concerns are based on the Queensland Government’s severe cost-cutting measures in the past nine months and continuing, and its expected reluctance to have to invest significant funds in another assessment system.
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Functional Independence Measure (FIM)
Another client underwent assessment of Functional Independence Measure (FIM) by an Occupational Therapist. The functions assessed are detailed in Attachment A to this submission.
The FIM assessment measures the level of disability (activity limitation) and any
restriction or lack of ability to perform an activity in the manner or within the range considered normal for a person of the same age, culture and education. It is not a measure of limitations. It measures what a person actually does, not what they should or might be able to do, and assesses the need for assistance, the type and amount of assistance, required to perform basic life activities effectively.
This type of report is easily understood and can readily be used to develop a statement of participant supports.
Specialist Disability Assessment
In Queensland, children with severe and complex behavioural and psychological issues and/or disability support needs which result in risk of or actual relinquishment of custody or guardianship to the State, can be referred by the department to Evolve Interagency Services (Evolve) for comprehensive assessment of biological, psychosocial, and cultural factors and a functional assessment (for children with a disability).
The Specialist Disability Assessment is conducted by an appropriate specialist such as a psychologist.
However, we are concerned at the quality of assessment and reporting when the Disability Specific Information section of an SDA report for one client consisted solely of a Fact Sheet of an Overview of Autism from a website developed by an Australian social worker, and a Fact Sheet on Understanding ADHD from the HealthyChildren website, associated with the American Academy of Paediatrics.
In an SDA report for another client, the Disability Specific Needs relied on a previous Occupational Therapy assessment and referred generally to the unlikelihood that the person would ever reach functional independence, and that they would require high levels of support in all areas of their life for the remainder of their life.
The SDAs did include a Risk and Safety Assessment, rating the likelihood of an event occurring as highly likely, likely or possible, and the consequences of the event as very serious, serious or minor. That assessment looked at the person’s: vulnerability to experience harm from others vulnerability to cause harm to self risk of harming or victimising others risk of absconding risk of engaging in harmful or hazardous behaviours such as substance abuse
One SDA report did not give any practical advice on how to assist the person with disability or the family, while another gave quite detained recommendations on placement arrangements, behaviour management and education.
Recommendation 15: That the Rules prescribe a range of assessments by suitably qualified professionals to determine level of functional capacity and supports needed to participate in the economic and social life of the community.
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Reasonable and necessary supports
Supports funded by the NDIS
We are concerned about the lack of clarity concerning the meaning of ‘reasonable’ in the term ‘reasonable and necessary’.
Various documents (Legislation Overview, NDIS Bill 2012 Explanatory Memorandum,
Productivity Commission Inquiry Report into Disability Care and Support) all agree that the support to be funded by the NDIS is ‘necessary’ to assist a participant achieve their goals and aspirations and take part in the community.
However, there appears to be some confusion as to how the term ‘reasonable’ is to be used.
The Legislation Overview states that the scheme will provide the necessary support ‘in keeping with what it is reasonable to expect the NDIS to provide’. It does not expand on how this is to be judged or by whom. If the scheme is not adequately funded, will it then be unreasonable to expect it to provide the level of support identified?
The Explanatory Memorandum explains that the criteria for the reasonable and necessary supports balances what support is necessary (to assist the participant to pursue their goals
and to facilitate their social and economic participation) with what is ‘reasonable’,
including: whether the cost of the support represents value for money and is ‘reasonable’ the efficacy of the support whether it is not reasonable to expect families and carers to provide the support whether the support would be more appropriately provided by other mainstream services (we expect this refers to Health etc.)
The Exposure Draft sets out what the CEO must be satisfied of for each support to be provided, including: the support represents value for money in that the costs of the support are reasonable, relative to both the benefits achieved and the cost of alternative support the support will be, or is likely to be, effective and beneficial for the participant, having regard to current good practice the funding or provision of the support takes account of what it is reasonable to expect families, carers, informal networks and the community to provide
So we see that ‘reasonable’ relates variously to costs of support, expectations of what the NDIS should provide, and expectations of what family, carers and community should provide.
In determining reasonable and necessary supports, we would request that the Act include provisions which proscribe subjecting families or carers to undue pressure or duress in order to keep them providing a level of unpaid support they have in the past and can no longer maintain. This occurs for example where parents of children with extreme levels of need are threatened with court action under child protection legislation, if they do not provide care for at least 50% of the time.
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Another example is where a middle-aged mother, of an adult child with extremely high needs and who receives a DSP, works full time and cares for her child part-time. Her own health is at stake as she gets older, and she can manage fewer hours and needs regular respite. Currently, she is being pressured to increase her contribution to caring for her child as he no longer attends school.
Recommendation 16: That the Act provide greater clarity as to what will be
considered ‘reasonable’ with respect to supports for participants.
Recommendation 17: That the Act proscribe subjecting families and other providers of unpaid care to undue pressure or duress in order to maximise their contribution to caring for the participant.
Supports not funded by NDIS
We note that the Rules may prescribe supports that will not be funded or provided under the NDIS, which are separate to supports offered as part of universal service obligations or in accordance with reasonable adjustments required under anti-discrimination legislation.
The Productivity Commission Inquiry Report into Disability Care and Support included a
Box of what supports the NDIS would provide, including: aids and appliances and home and vehicle modifications personal care transport assistance, including taxi subsidies
One of our clients had the unfortunate situation where funding for continence aids provided for her son (who needed total support for personal care), was discontinued by Disability Services because they were to be funded and provided through the Medical Aids Subsidy Scheme (also a State government agency). There was no hand-over of responsibility and the client had to go through another assessment process which took several months to finalise. In the meantime she had to pay for the aids herself or seek emergency funding approval from Disability Services, the original funder.
We are concerned that comprehensive support needed for participants may still be
fragmented, and some particular supports not provided or not provided in time.
We intend to comment further on this issue when the draft Rules are available for public comment.
Recommendation 18: That where the Rules identify supports which will not be funded by the NDIS, the Agency is to provide general support to participants to assist them to access those supports from outside sources.
We note that according to section 33(3) the necessary and reasonable supports to be funded may be specifically identified or described generally in the statement of participant supports. The Explanatory Memorandum gives an example of purchasing a particular model of wheelchair as opposed to purchasing items to assist with mobility.
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Since mobility aids vary greatly from walking canes to all-terrain motorised wheelchairs
and lifts, and costs vary accordingly, in our view it would be inconsistent with the
‘insurance approach’ of the NDIS to fail to sufficiently identify where the expenditure on support is actually going.
According to section 37, a participant’s plan comes into effect when the CEO has received the participant’s statement of goals and aspirations and has approved the statement of participant supports.
We are concerned that a participant’s plan cannot be varied, only replaced under relevant review provisions. We would expect that this will be an incentive to have supports
described generally, rather than specifically identified in the plan (thereby diluting
actuarial data needed in the insurance-based approach to the NDIS) to avoid further processing.
We note that a participant may give the CEO a changed version of their statement of goals and aspirations at any time, and the participant’s plan is taken to be replaced by a new plan consisting of the new goals and aspirations and the existing supports.
However, if the supports which are needed change (for example, more out of home care and consequently less respite care), then relevant provisions refer to ‘reviewing’ the plan. This is essentially replacing, not varying the plan, in particular the statement of participant supports
We note that in provisions relating to the original approval process, if the CEO did not make a decision within the designated time: whether or not the prospective participant meets the access criteria, or
to request the person undergo an assessment or a medical, psychiatric or
psychological examination, or once receiving those reports, whether the prospective participant now meets the access criteria or make a further request for assessment/examination then the CEO is taken to have decided that the prospective participant does not meet the access criteria.
Also in that original process, the CEO ‘must endeavour to decide whether or not to approve the statement of participant supports as soon as reasonably practicable’.
In the process for reviewing a participant’s plan (essentially the statement of supports which the CEO must approve), the provisions require the CEO to decide within 14 days of a request for review, whether or not to conduct such a review. If the CEO has not made a decision within that time, then it is taken that the decision was not to conduct a review.
The draft Bill does not state what effect this decision not to conduct a review has on the ‘new’ statement of participant supports. Does it mean that the new statement of supports is taken to be rejected or approved? We note that this is a reviewable decision, so it would indicate that the new statement of supports is rejected. In that case, do the existing supports remain in effect until the decision is reviewed, pursuant to section 100(7)? This should be made clear in the earlier provisions.
In any event, it is our view that it is completely unsatisfactory for a request to change supports be rejected simply through expiration of time for the CEO to decide whether or not to conduct a review (even if this lack of decision is automatically reviewable). The provisions do not set a time limit for the completion of the review, just on how long a participant has to request a review (3 months). We would prefer that the onus was on the
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CEO to review major changes in supports, and for the minor changes to be approved in the absence of an active rejection.
In addition, the scheme does not appear to provide flexibility to accommodate unexpected changes in support needed. Take for example, if the primary, unpaid care-giver is taken ill or is hospitalised and cannot continue to care for the participant for a period of time, or if a person with paraplegia who is usually self-sufficient with respect to personal care, suffers an upper extremity injury which makes them totally dependent on carers until the injury heals. The participant or plan nominee should be able to seek immediate emergency full time support that will not be deducted from the established long-term part-time support.
Recommendation 19: That the process for reviewing participants’ plans be clarified so that a decision by the CEO not to conduct a review of an existing plan, results in automatic approval.
Recommendation 20: Alternatively, that the process includes a simplified means to vary statements of participant supports, as well as replacement of those statements.
Recommendation 21: That the NDIS make specific provision for emergency full-time support to be provided without diminishing the long-term support established in the statement of participant supports.
Managing funding for supports
Nominees
If a participant does not make a plan management request, the funds are to be managed by the Agency or a registered plan management provider specified by the Agency.
We note that a statement of participant support may specify that funding for the supports is to be managed by a plan nominee (section 42). The plan nominee may be appointed by the CEO at the request of the participant or at the initiative of the CEO (section 86). If a plan nominee has been appointed, the statement of participant supports must provide that the funds are managed in accordance with the terms of the plan nominee’s appointment (section 43).
In our view, section 43 should make it clear that if a plan nominee has not been appointed, the participant may request that they themselves, a registered plan management provider or the Agency, manage the funds.
Recommendation 22: That section 43 be amended to make it clear that if a plan nominee has not been appointed, the participant may request management of funds by the participant, a registered plan management provider or the Agency.
We note that the NDIS includes provisions which allow a person who has parental responsibility for a child with disability to make a plan management request to manage the funds for the supports for the child.
Parents of adult children with significant disability and lacking capacity often take on the role of informal substitute decision-maker for their child. This may involve acting as trustee with respect to accommodation leases and bank accounts, and managing Disability
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Support Pensions. Centrelink already allows for payment and/or correspondence
nominees to be appointed.
The NDIS is unclear how parents can apply to be appointed to manage funds for their adult children. The relevant provisions allow for plan/correspondence nominees to be appointed at the request of the participant or at the initiative of the CEO.
In our view, a substitute decision-maker, whether formal or informal, should be able to apply to the CEO for appointment as plan/correspondence nominee for the participant.
Recommendation 23: That sections 86 and 87 be amended to allow for a substitute decision-maker, whether formal or informal, to apply for appointment as plan and/or correspondence nominee.
Acquittal of NDIS amounts
We note that the NDIS requires that funds received are spent in accordance with the participant’s plan. The statement of participant supports will detail the package of supports needed, not a block of funding.
Since funds are to be managed wholly or to the extent specified in a plan management request, or wholly by a registered plan management provider or the Agency, the level of administration associated with managing NDIS funds will vary significantly.
We have been informed that some providers charge up to 30% to administer support funding. We question how can only 70% of funds being used for actual service delivery be considered ‘value for money’?
We would expect that the administration costs associated with delivery of full-time comprehensive service delivered by permanent employees of the provider, should be quite different to costs of acquitting payment of a small group of sub-contractors providing part time support.
In developing Rules related to management of funds, we suggest that the Agency should
investigate world best practices of managing such funds, and publish appropriate
guidelines. If providers cannot meet reasonable expectations on service delivery, and no alternative is available in that geographic location, then the Agency should manage the funds directly.
Recommendation 24: That the Rules set limits on costs for administrative functions in service delivery, and provide guidelines regarding level of support to be provided.
Compensation payments
We have concerns with respect to compensation provisions in Part 1 of Chapter 5.
Taking action to claim or obtain compensation for personal injury involves legal advice and representation, which may or may not be available to a participant on a pro bono or speculative basis. Directing/requiring the participant to commence such action may cause them to incur expenses they cannot afford at that time. People in rural or remote communities may not have access to lawyers with
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specialist accreditation in personal injury law, which may affect the outcome and quantum of any agreed settlement or judgment. Different jurisdictions have different requirements regarding pre-court process and giving of notice. A child’s right to recover damages extends to three years after their 18th birthday. It may not be in the child’s best interests to commence action before their 18th birthday. As such a decision would be based on legal advice, is the CEO suitably qualified and experienced to make a contrary decision, or will he obtain such legal advice? Counsel’s opinion as to prospects of success is usually sought after the injured person’s condition has stabilised, all relevant independent medical assessments have been conducted and all discoverable material has been exchanged. How will the CEO be ‘satisfied’ that a participant has ‘reasonable prospects of success’ without the benefit of all relevant information? Will the CEO be a barrister or retain one to advise him in such matters? The heads of damages awarded by the Courts do not easily translate to supports funded by the NDIS (to be established in Rules yet to be drafted), such as ‘past care’ which includes damages for gratuitous care (which would not apply under the NDIS).
Awards may be reduced to apportion for contributory negligence. Will the
recovered NDIS amounts be reduced accordingly?
In our view, the NDIS will present a new chapter in personal injury law. Just as refunds of Medicare costs and Workers’ Compensation payments are calculated in awards, we expect that in future, NDIS costs will also be included.
Until then, we recommend that the scheme proceeds slowly and consults widely with the legal fraternity and the judiciary, on how best to recover reasonably incurred costs for supports provided by the NDIS.
We also note that the suspension of a participant’s plan for failing to take action to claim or obtain compensation as required by the CEO in a formal Notice is not a reviewable decision, only the issue of the Notice is. In our view this is punitive, for the various reasons detailed above, especially when a participant has been assessed as meeting the access requirements and a statement of participant supports has been approved (that is, the participant is demonstrably in need of NDIS support).
Recommendation 25: That Part 1 of Chapter 5 (Requirement to take action to obtain compensation) be deleted in its entirety.
Notices
We approve the absence of a provision making a failure by a participant or prospective participant to comply with CEO’s Notice of requirement (section 54), an offence. In our view, making such a failure an offence would be unjustly harsh. Since the CEO may, on his own initiative, conduct a review of the participant’s plan at any time (section 48(4)) he can change the package of supports, including who will be responsible to manage the funds, if it becomes apparent that the participant is not managing the funds adequately.
We note however, that failure to comply with a CEO Notice of requirement in other situations is an offence, carrying a straight out penalty of 30 units ($3,300.00), not a maximum penalty:
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to other persons, for information required to maintain the integrity of the NDIS (section 57) to the plan nominee, for statement regarding disposal of money (section 84) to a person who owes a debt to the Agency, or another person who the CEO reasonably believes has information/document relevant to the debtor’s location or financial position (section 189)
Each of these sections (making the failure to comply an offence) do not apply if the person has a reasonable excuse.
We note however, that section 84 relating to the plan nominee includes a provision that the particular offence is an offence of strict liability (meaning there are no fault elements for any of the physical elements of the offence). We fail to see how this subsection assists the operation of the NDIS given that a reasonable excuse makes the failure by the plan nominee not an offence.
In our view, the penalty for failure by a plan nominee (who we expect will often be family member of the participant) to comply with the Notice is too harsh. We also expect that in most situations, the plan nominee would have a reasonable excuse.
Recommendation 26: That the penalty in sections 57 and 189 be set as maximum penalties, and that the penalty in section 84 be reduced and set as a maximum.
Recommendation 27: That section 84(8) making the failure by a plan nominee to comply with the Notice on offence of strict liability, be deleted.
Conclusion
We commend the Government on bringing about this ground-breaking scheme to provide certainty of adequate support for people with significant disabilities and their families. It is a giant step forward in how we support people with disability. With amendments suggested by our service and others, it can operate with world’s best practices.
We thank the Committee for the opportunity to make a submission on the Exposure draft of the NDIS Bill 2012. We look forward to receiving draft Rules when they have been drafted, and an opportunity to comment further at that time.
If you have any queries regarding this submission, please direct your enquiries to Sue Tomasich at out office.
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Attachment A
FIM Assessment
The assessment reports on: level of abilities in the performance of majority of motor and cognitive activities assessed what level of supervision (e.g. high level, constant one-on-one) and assistance is required in the performance and maintenance of those basic life activities what risks the person assessed faces without the appropriate level of supervision and assistance (e.g. self-neglect, malnutrition, disease, infection, illness, accidental injury, and harm from others)
Levels of Dependence range from Completely Independent through Modified/Complete to Complete Dependence.
Motor Control
Self-care
Eating: Level of Dependence – whether Supervision or Setup Required Is all food prepared for the person? Is prompting required to initiate engagement in meal times? Is food required to be cut into manageable portions (what foods) and liquids pored? Is frequent prompting required to reduce speed of eating or to take smaller portion sizes per mouthful? Is monitoring required of food and fluid intake during mealtimes (nutritional content etc.)? Maturity of gross palmer grasp to grasp eating utensils? Any difficulties in hand-eye coordination, bringing utensils to mouth, manual dexterity, using utensils to cut and or manipulate food?
Grooming: Level of Dependence – whether Total or Maximal Assistance Required Is prompting with supervision required to initiate engagement in grooming? Level of assistance required for oral care and hair grooming, whether verbal and visual prompts required? Is the person aware of dirt or grime on face or hands, does the person require frequent prompting with supervision for washing hands and face?
Bathing: Level of Dependence – whether Total or Maximal Assistance Required Does the person primarily use (likes) baths or showers? Does the person consistently wash or dry all ten body parts assessed? Is prompting required to initiate engagement in bathing? Is full manual assistance required in washing and drying? Is the person able to wash and dry perineal area to a hygienic or acceptable standard – whether significant verbal and visual prompting required?
Dressing – Upper Body: Level of Dependence – whether Supervision or Setup Required, or Total
or Maximal Assistance Required
What type of clothing does the person primarily wear – shirt, tee-shirts?
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Is prompting required to initiate engagement in dressing upper body? Is supervision required – whether any/some verbal and visual prompting is required? Level of assistance required to correct position of clothing – e.g. collar position or untwisting shirt?
Dressing – Lower body: Level of Dependence – whether Supervision or Setup Required, or Total
or Maximal Assistance Required
What type of clothing does the person primarily wear – underwear, shorts, socks, shoes? Is prompting required to initiate engagement in dressing lower body? Level of assistance required (for example full manual) to don clothing and lace up shoes – whether visual or verbal prompts required? Are shoes usually on the right foot?
Toileting Complete: Level of Dependence – whether Total or Maximal Assistance Required
Does the person (if male) sit for both bladder and bowel voiding? Is the person independent in doffing shorts and underwear? Level of assistance required to don underwear? Level of assistance required in perineal hygiene – whether some/significant visual or verbal prompting required? Is the person able to clean perineal area to a hygienic or acceptable standard?
Sphincter Control
Bladder management: Level of Dependence – whether Total or Maximal Assistance Required Level of control – whether able to open urinary sphincter when needed and keep closed rest of the time? Is engagement in bladder voiding self-initiated? Is there difficulty in controlling flow and direction?
Bowel Management: Level of Dependence – whether Total or Maximal Assistance Required
Are Bowel management products worn? Level of bowel control – whether able to open anal sphincter when needed/when prompted with set up, whether able to keep closed for rest of time? Frequency of daily ‘accidents’ – whether expresses to staff that soiling occurred? Is soiling due to poor anal sphincter control or limited toilet training? Is any engagement in bowel management self-initiated? Is supervision and prompting required to attend to and remain on toilet for long enough period to open bowels – whether tries to stand up and discontinue?
Transfer
Bed/Chair: Level of Dependence – whether Maximal, Minimal Contact or Nil Assistance
Required
Whether any assistance required?
Toilet: Level of Dependence – whether Maximal, Minimal Contact or Nil Assistance Required
Whether any assistance required?
Shower/Tub: Level of Dependence – whether Maximal, Minimal Contact or Nil Assistance
Required
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Whether manual support is required to transfer in and out of bath tub? Whether high risk of falls without manual support?
Locomotion
Walking: Level of Dependence – whether Maximal, Minimal Contact or Nil Assistance Required
Whether any assistance required?
Stairs: Level of Dependence – whether Maximal, Minimal Contact, Supervision or Setup, or Nil
Assistance Required
Is close supervision required to ensure safe stair climbing? Are hand rails required for support?
Cognitive Items
Communication
Comprehension: Level of Dependence – whether Maximal Prompting Required
Are both auditory and visual comprehension styles used to understand directions and conversations regarding basic needs (physiological needs)? Is prompting required with visual and verbal clues to understand directions and conversations based on basic needs for majority of time?
Expression: Level of Dependence – whether Maximal Prompting Required
Are both auditory and visual expressions styles used to express basic daily needs? Does the person express basic daily needs appropriately or consistently with/without prompting or staff initiated exploration of his needs?
Social/Cognitive
Social Interactions: Level of Dependence – whether Total or Maximal Assistance Required
Does the person engage spontaneously with peers, allow peers to interact with the person, and reciprocate? Is one-on-one supervision or assistance required during most peer-based activities? Frequency of behavioural deregulation (aggressive, demanding etc.) during social interactions – whether staff intervention required to restrain/physically re-direct? Is medication required to manage behaviour?
Problem Solving: Level of Dependence – whether Total or Maximal Assistance Required
Level of assistance required to identify and to solve simple routine problems related to basic life activities? Frequency of discontinuing or abandoning tasks or behaviourally and or emotionally deregulating if problems occurred during engagement in simple daily activities – whether staff intervention, restraint/physical re-direction required? Is there any spontaneous seeking of assistance or direction?
Memory: Level of Dependence – whether Total or Maximal Assistance Required
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Level of assistance required in executing requests of one or two instructions and following routines – whether visual and verbal prompts required? Level of difficulty (significant/moderate) with sequencing routine tasks and activities into a logical order?
In our view, the assessment should also look at Sleep Routine: Is prompting required to engage in bedtime routine? Ease of settling down in bed to go to sleep. Are any aids required (toys, music etc.) ? Does the person remain settled and undisturbed for recommended 7-8 hours sleep or wake/rise frequently (is close supervision required)? Mood on waking up.
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