Inquiry into the quality and care of services provision for disabled people and how they might be improved

Oral Submission to the NZ Social Services Select Committee – 15th August 2007

Introduction:

ADPN is an Auckland based network of 97 disability service providers. Membership organisations represent the broad spectrum of providers across the whole of range of disabilities, large, small, Auckland branches of national organisations, stand alone providers. Our comments in both our written and oral submissions have come from our membership.

We acknowledge that many of the submissions you have received and heard will necessarily focus on the negative and lean towards a perception of a sector in crisis and we will also be presenting issues of concern arising from our member groups. However we firmly believe that the inability of providers to meet the aspirations of people with disabilities and the lack of choice of service because of the constraints placed on providers can be overcome.

By now you are probably tired of hearing everything that people think is wrong with the sector – so you can no doubt get an appreciation for how the sector feels at continuous consultation with no change. What’s needed for people with disabilities to have a meaningful inclusive life in the same way as non- disabled?

There is a new generation of disabled young people and young adults and their families who have been educated in an inclusive education setting who have high expectations – they know this should lead to an inclusive ‘ordinary life’ after school. This new generation of people will not be satisfied by the current inflexible custodial care model, but want real lives, real jobs, and real relationships; which for many older people with disabilities and their families has been just a dream.

  • NZDS vision, actions and objectives very much part of every day life, modelled by govt
  • people valued for who they are and their valued contribution to society
  • real job, real pay, meaningful community inclusion – ie a positive profile in the community
  • independence and freedom, seamless service, real choices
  • actively involved in decision making and design of any service they might use
  • services that enhance, not detracts from the quality of life for those people using them
  • Balance between creative opportunities and innovation and the dignity of risk without repercussions from audits, funding, contracts or ‘rules’
  • creative and flexible residential options, making, governed by people with disabilities themselves, secure ongoing funding to continue
  • well paid, trained staff
  • advocacy not required because people at school, at work living in a home of their choice with people of their choice as of right
  • real choice that allows people with disabilities to make decisions without restrictions placed by bureaucracy
  • providing an incentive for providers to be creative
  • any consultation would be meaningful with outcomes publicly released and actions following. Consultation actually reflecting what had been said, not what consultant thought was wanted or had already decided was needed (consultation v informing)
  • any audits be simple, easy to use tools and would look at the quality of life of an individual and would be carried out by people with disabilities and their families in conjunction with service provider and auditor – equal power in process
  • whole of government approach, not piecemeal current approach, responsive, ethical public service

What needs to change for that to happen?

  1. New Zealand Disability Strategy

    ADPN unanimously supports the vision and plan for positive change in lives of people with disabilities and their families. Objectives and ideals encompassed in NZDS have been grasped by NGOs and families but the government sector has been left behind. We know government agencies and departments have work plans aligned to the strategy but there is no accountability against those work plans. We see:

    • lack of partnership, value, respect
    • lip service – on paper but not in actions – how mandatory is it????
    • Little encouragement with innovate ideas even in the implementation of NZDS – when no publicity or attempts at education tools came from ODI it was the ADPN in conjunction with the then Auckland College of Education who put together a training package Kia Rangatu – we funded the production, publicity and distribution and our request for some assistance from ODI was turned down
    • Little or no talking or working with each other, much time and money lost by lack of collaboration
    • having no ‘teeth’ eg MoE
    • isolation of ministry people from real people and the impact their decisions have on people’s lives
    • information from ministries is seldom in an accessible format, easily accessed and no flow on
    • Current models of care and service delivery are incompatible with vision, actions and objectives of NZDS

  2. Lack of choice

    • restrictive and narrowly determined models of service provision
    • contracts inflexible one size does not fit all
    • services created that don’t really meet the needs of the people when they need it eg establishment of 0800 # ASD but don’t want to leave a message and wait for someone to come back to them, want respite / help now – easier to implement than to get a caregiver in a family home so easy job gets ‘ticks on the board’ rather than something that might make a real difference, eg respite cut back but desperately needed and means people can stay at home for longer rather than move into care
    • services specified and highly defined mean capacity to meet individual, holistic, changing needs is diminished
    • person fit the service, not service fit the person – NASC tardy with service / consultation that is often not relevant and actual consultation does not reflect the expectations of the client. NASC process, get an assessment, focus on outcome but usually outcome of NASC not outcome sought / proposed by person and or their family / family/ time frames – NASC, actually receive service – govt controlled process for individual needs assessment has limited responsiveness and flexibility services can offer (advice to put EPOA, or Welfare Guardianship)
    • it’s more about what you can’t do, than what you can
    • above result in lack of opportunity, creativity and flexibility

  3. Funding models

    • Long term support centred on individual – NZDS Obj 7 but all funding, contracts and compliance based on collective model
    • reflect custodial model of care and service delivery
    • transparent pricing model – meant to be individualised, but is actually based on having 5 people living in one home. While govt purchases ‘bed nights’ and little else that’s what you get plus a horrendous bureaucracy to hide what is not being bought – durable human connections
    • flexible, innovative models of support much harder to provide
    • no room for individual needs to be met or well supported
    • annual contracts don’t address long term sustainability issues or provide assurance of ongoing support for either providers or users of services, doesn’t allow for long term planning, development or sustainability of providers (cf # of providers who have come and gone in last 10 years)
    • doesn’t encompass CPI, cost increases or legislative change, eg increase in annual leave
    • contractual relationship between ministries and NGOs is based on competitive market model and shows poor investment in NGO sector to develop capability, competence or provide adequately for ongoing sustainability of services – best example is MSD partial funding doesn’t provide for transition or vocational services in many communities
    • sustainable and realistic model of funding needed

  4. Bureaucracy (MoH)

    • loss of quality in the bureaucracy – lots more professional ‘carers’ but less caring professionals
    • increasingly complex, and frequent changes
    • bureaucracy driven by a need to control providers rather than deliver a service that enhances the lives of people
    • highly prescriptive contracts that make no allowance for flexible, creative support styles for residential care
    • may be contractual guidelines to honour what govt purports to value about NGOs but contracting process bears little resemblance to guidelines, (no negotiation either in regard to service, contract)
    • contracts are not negotiated – they are imposed, mean providers need to become bureaucracies in order to meet contractual obligations
    • last institution may have closed but current contracts just replicate institutions but with smaller groups of people in smaller settings
    • MoH not efficient or responsible purchasers of services, payments late (funded retrospectively so organisations carry large burden of debt while waiting), payment systems not up to job, contract negotiations one sided with changes made with no discussion
    • creative, innovative proposals that don’t fit standard model or contract can take years to negotiate and get approval for. Eg Katie’s – 2years
    • reports / research/consultation ad infinitum but no acceptance, publication or action and then research repeated eg “To Have an ordinary life” – where is it now, but sitting on a shelf gathering dust, Care and Support in Community Settings,
    • Expectations have been raised on many occasions and the never met so people with disabilities, their families and providers have lost faith and are disillusioned
    • pilots carried out – funded for one year and then stopped, no account of outcome or affect on individuals involved – experiments / ethics – actually leaves people worse off as have a taste of what they want and then taken away from them
    • consultation – lot of information that consulting about already known and consulted on before or been told to MoH on numerous occasions, consultation money better used for services,
    • plain language essential not bureaucratic speak
    • use of consultants with experience in disability sector
    • perception that nothing has changed in 20 years

  5. Audits / compliance issues

    • overdose of audits!
    • cost of compliance, time and work load involved in amount and detail of documentation required – service provision – lives on hold
    • stifle creativity – reward compliance to a minimum standard rather than best practice – research shows no correlation between success in audits and quality of life of individuals
    • assessments of service quality and improvement in delivery of support services are essential but the current processes and standards do not deliver this
    • contractual and certification, compliance
    • replication of material – each funder has own monitoring system so each organisation is audited against different sets of criteria, or including same criteria but asked to report in a different way
    • services in continual audit cycle
    • expectations and responsibilities placed on people at all levels of an organisation is huge
    • focus of provider is on compliance, everything else stops focus on doing paperwork – rewards organisational compliance rather than quality outcomes for people with disabilities
    • not related to improving service or quality of life – more about systems (3 different coloured chopping boards or mop heads of a certain type! don’t actually improve the service given to the individuals living there) in fact do absolutely nothing to improve the lives of people
    • based on medical model deficit view of disability not social model (cover hospitals, rest homes and any provider with 5 bed homes – range all using same tool) audits need a values based approach
    • whole industry has grown up around audits with a range of companies who then justify their existence by re-interpreting of compliance standards and regulation that have to justify their existence in the next contract funding round
    • subjective – allow for auditors with grudges against provider, pet issues eg type of mop head rather than if current mop head does the job, insistence on 40 for hot water temp but power companies give diff temp as being safe
    • audits have become adversarial
    • further institutionalises people, stifles flexibility and creativity and empowerment of people with disabilities is lost
    • audits should focus on quality of life determined by values based outcomes not check box outcomes. They need to focus on personal development, self determination and meaningful community inclusion.

  6. Partnerships between MoH / MSD

    • failure to resolve issue of appropriate funding and assessment for day services/vocational services and community inclusion
    • partial funding contract model used by MSD is seriously flawed and does not allow for service delivery that meets the aspirations of individuals or for proper implementation of Pathways
    • MSD appear to have no intention of engaging with providers in any meaningful way (appears patronising and lip service – eg dissolution of Way Ahead Working Group)
    • MoH increasingly disengaged from sector – their role letting and enforcement of contracts, delivery of funding and in-house planning that seems to have little relevance to the sector they are meant to be in partnership with
    • MoH delivery of support to the sector has failed in regard to:
      • responsiveness
      • transparency
      • connectedness
      • payment systems
      • responsible and open contract negotiations
    • Ministry bureaucracy is isolated from the impact of their decisions on the lives of people with disabilities, their families and service providers
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