The AOTEAROA NEW ZEALAND ASSOCIATION OF SOCIAL WORKERS (ANZASW) Disabled Children out-of-home Placement Working Group.

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1 Submission from: The AOTEAROA NEW ZEALAND ASSOCIATION OF SOCIAL WORKERS (ANZASW) Disabled Children out-of-home Placement Working Group. Submission on The Disabled Children out-of-home Placement Review To: The Disabled Children Project Submissions due 29 th May 2015 ANZASW National Office, DX Box: WX 33484, Christchurch P: F: E: admin@anzasw.org.nz

2 Introduction The working group who put together this submission is made up of Social Workers who are members of ANZASW with at least 50 years combined experience working in a wide range of agencies providing service to children with disabilities and their families. The review of voluntary out of home placement is an issue of fundamental human rights. In offering this submission we believe that the outcome of the review of voluntary out of home placement must be consistent with The New Zealand Disability Strategy (2001) and the United Nations Convention on the Rights of Persons with Disabilities which New Zealand ratified in As social workers we advocate for people we work with who experience discrimination. The right of children to live with their family in their community is a fundamental right in this country. However for children with disabilities and their families this fundamental right cannot be taken for granted. Put simply this is because New Zealand is not an inclusive society. There are significant barriers to the lives and aspirations of children with disabilities being fully considered, valued and part of New Zealand life. We work with families and whanau who have aspirations for their children, wanting the very best for them. We see a range of families including those who enjoy and manage their children; are just surviving managing their children; access good support; struggle to access the support they need and are deeply stressed; have placed children away from home; are near breaking point, with placement out of home being considered. What one family can manage in a child can be too much for a different family. Resources and networks of support available to one family will also be very different to another. We think the points we make in our submission are relevant to all children with disabilities and their families. What is critically missing across the country is early intervention and then continuity of support throughout a child s life with their family, i.e. guidance and support services available for all families and whanau with disabled children. Such services, working from a child rights base, can genuinely get to know the family and child, assist families and whanau build a vision for their child s future and walk alongside families to navigate the complex and fragmented disability and education systems. One family described it as seeking a life plan for a child like mine. Related to this lack of early intervention and ongoing walking alongside a family as their son or daughter grows up, is the lack of a full statistical picture of disability in New Zealand. The New Zealand Disability Strategy (2001) and The Child Poverty Action Group (2015) highlight the failure to collect comprehensive data on disability as a barrier to informing, planning and assessing support options and service provision. 2

3 Aotearoa New Zealand Association of Social Workers Aotearoa New Zealand Association of Social Workers (ANZASW) is the professional body for a national collective of more than 3,500 social workers, who have day-to-day involvement with the most vulnerable people in our society. Our work is guided by a Code of Ethics that is aligned with the International Federation of Social Workers (IFSW). Social work is founded on principles of human rights and social justice. We are guided by the Treaty of Waitangi and respect the equality, worth and dignity of all people. In accordance with the March 2012 IFSW Global Agenda 1 we commit ourselves to supporting influencing and enabling structures and systems that positively address the root cause of oppression and inequality. We commit ourselves wholeheartedly and urgently to work together, with people who use services and with others who share our objectives and aspirations, to create a more socially-just and fair world. We believe the overarching principles of social work are respect for the inherent worth and dignity of human beings, doing no harm, respect for diversity and upholding human rights and social justice. Our mission is to enable people to develop their full potential; our skill-set is problem solving and facilitation of positive change in individuals, organisations, whānau and communities. We recognise the environment contains opportunities for people to be both agents of change and victims of factors beyond their control. As a profession, we strive to alleviate poverty, foster social inclusion and liberate those who are vulnerable or oppressed. Social work is evidence-based and draws on theories of human development, behaviour and social systems. Social workers respond to crises and emergencies along with the personal or social problems that arise from experience of barriers, inequities and injustices within our society. Our interventions involve problem solving, development of coping strategies, one-on-one counselling and therapy, family and group work, agency administration, community organisation, social action and social change and helping people to access services, resources and support systems within their community. We work across government and non-government settings including community organisations, iwi agencies, private practice, youth justice, child protection, mental health, addictions and disability. We are involved in research, training, education, professional development, competency assessment, data gathering, risk assessment, structural analysis, interagency protocols and the improvement of social policy. Recommendations 1. Early support for families a keyworker role to assist in navigating the health, education and other services which could provide support. 2. Flexible Disability Supports for example, a review of the Carer Relief system so that funding could be used more flexibly by families to meet their child s needs. 3. We support extended access to Enhanced Individualised funding and the Ministry of Health Wrap around service to ensure that families get help before the crisis stage. 1 International Federation of Social Workers, International Association of Schools of Social Work and International Council on Social Welfare (2012). The Global Agenda for Social Work and Social Development Commitment to Action. Available at isw.sagepup.com (accessed 13 June 2012) 3

4 4. Equitable access to disability support regardless of where in the country the child and family live. 5. Disabled children s right to be the same as all children s rights. We recommend that Section 141 be removed as a pathway. 6. Independent Advocacy for the child if out of home placement is being considered or has been implemented; and at the time of transition to adult services. 7. Endorse recommendations of the Child Poverty Action Group report It shouldn t be this hard, in particular the need to have accurate and useful data be collected, collated and reported. Responses to Questions in Discussion Document 1.1 If families caring for a severely disabled child at home are having difficulties accessing existing support and services available to them, and, if so, why is this? The current disability support system in NZ is complex, piecemeal, patchy, variable and underfunded. Services are funded through four government agencies (MOH, MSD, MOE and ACC) and are generally un-integrated. Families are subjected to multiple assessments, usually deficit based, in these systems, with variable rules on who can access what and what is funded. The Report of the Social Services Committee on Inquiry into the Quality of Care and Services Provision for People with Disabilities 2009, clearly outlined problems and barriers that disabled people and families experience. Some of the initial demonstrations governed by disabled people and families, established as a response to the Select Committee findings, are showing promise. However these demonstrations are small and only available in a few places throughout the country. The pace of change within the disability sector is slow and there needs to be bolder moves by Government to address the growing crisis in disability supports. Families can become isolated from services, be unaware that support is available, and believe that they should be able to cope on their own or have interpersonal issues with services that interfere with the quality of support. The following points are major concerns/problems with the current support and services available: Variation and lack of early support services and availability o There are very few crisis services available for disabled children. o What is missing from existing supports and services is the facility to support and encourage parents to engage with a service and to follow up when they do not engage. o If support were available earlier many crisis situations could be avoided. Gruelling process of Needs Assessment o Needs Assessment Service Coordination (NASC) processes and approaches vary across the country, as do the systems and supports available. 4

5 o o o Generally, current NASC practice leaves a great deal of responsibility for accessing supports to the families themselves. If they don t ask, they will not receive support. If there is a disabled child in a family, that family will need long term planned support, but they may not ask for it until they are in crisis. It is very emotional to have to describe your child in detail to a complete stranger. Parents/caregivers can feel a mix of grief and guilt for not being able to cope and for needing to call on support. Questions are designed to assess adults not for children. Not enough weight is given to needs of parents, carer, and siblings. The questions relevant to them come at the end of the long and arduous assessment tool. NASC system focuses on the child and parent as individuals, not as a family system. o If the parent is assessed as meeting eligibility requirements for DSS funding, then the support that can be provided is on the basis of her/his needs, not her/his needs as a parent. o There needs to be flexibility to conduct Needs Assessments in the evenings to accommodate working parent or other children and family in the household. 3 yearly NASC full review and other years a letter or phone call. o Children grow and change during that time. o For many families, asking for help is hard. o There are barriers to requesting a full review. The referrer seems to have to show that the disability support needs have changed but surely this is what the needs assessment will show. o At certain periods of a child s life there should be an automatic assessment review transition from primary to high school, at puberty, at transition from high school to after school care. There are certain points which are predictably more challenging for all. Lack of flexibility with funding o Families often know exactly what would make the biggest difference in being able to have their son or daughter continue to live at home but have reported a lack of flexibility in funding criteria. o For example a family could receive funding for an ensuite wet area yet they could not get the practical assistance of further hours for an extra pair of hands and eyes in order for the child to be at home safely supervised while parents were also at home engaged with their other children. o In one area of the country a trial of Enhanced Individualised Funding has opened up options for how some families use disability supports flexibly. Previously these families were granted services such as respite care, carer support, home and community supports. Families report the flexibility about what services and supports they buy as improving their wellbeing and sense of choice and control. This approach should be available to more families in other areas of the country. Enable equipment is provided to one household only (funded by the Ministry of Health). o If the child is to go to a different house for care, either all the equipment needs to go too, or the child is not well supported in the respite or second home. This one house rule creates a huge practical barrier to short breaks, respite care and shared 5

6 care. It is also a fundamental barrier to children with disabilities having ordinary lives. Inadequacies with carer support o A day of Carer Support (24 hours) is currently funded at $75. o The outdated process of claiming creates barriers, i.e. forms have to be posted not ed. o There are delays in payment. o At times families pay carers up front and have to wait for reimbursement. Carer Support Finding and Retaining Carers o Families are allocated Carer Support but cannot find anyone to do the care. o Families are too busy and stressed to get back to the NASC and say, help us find a way to use this allocation. o Extended family can sometimes help care for a younger child but as the child grows and is heavy to lift, or is difficult to manage, extended families can often feel out of their depth and the immediate family become further isolated. o There are contracted providers around the country who do carer recruitment and matching but this is not consistently available. o The website for matching carers with families that is currently under proposal by the Ministry of Health is not yet in place. This system will work for some families but is not a panacea. There needs to be an alternative system for those who do not have internet access or who require assistance to secure a competent and trustworthy carer. o Families give up looking for a carer. o When a family does find a good carer, the person is often in high demand from other families also, and can become overworked and stressed themselves, especially considering the poor remuneration. Skilled Workforce for carer support o Disability is undervalued by Government; carer support is funded as a reimbursement, not a wage. o The current rate of reimbursement often means carers are volunteers, students, unqualified and/or retired. This is not necessarily negative, but does provide limitations especially for families whose children have high support needs. o The current rate of reimbursement often means families pay more from their own income or utilise more of their allocation, to offer a fairer rate of reimbursement and to ensure they retain the most positive, involved and loving carers. The limited availability of the Wrap around service that is funded by the MOH o We understand this service has had good results for families, including keeping families together; however it is only available for a few families at a time and seems to be accessed only when the family is at breaking point. o By this time there has been damage to family relationships, parents are exhausted and struggle to implement new strategies. o The intervention needs to be more widely available, sooner. Waitlists for behaviour support o Behaviour Support is still experts coming in to people s lives to provide a plan, not a hands on support service where a positive ongoing relationship is established with 6

7 o o the family. We often see the need for a trained workforce to assist families implement the plan. There are staff shortages which maintain the length of wait in many areas. By the time the worker engages with the family the family is often exhausted. Lack of availability for Rural families o It is very difficult for families in rural situations to access good support. This can be service providers simply being unable to provide staff, or being underfunded to provide rurally. o Families are unable to find local people who are willing to provide care through Individualised Funding or Carer Support. Notifications to Child Youth and Family o Referrals to CYF usually result in a quick investigation and closure, with the message that health and disability services need to support the child. o The long term neglect of a child s developmental potential is not seen as warranting CYF intervention. o CYF social workers are often not familiar with disability needs, disability rights approaches or the support options available. o In many parts of the country CYFs does not have foster placements for children with disabilities or contracts with community agencies to provide this, especially if the children have challenging behaviour or high health needs. 1.2 What is working well in terms of supporting families caring for a severely disabled child at home? If parents and service providers are able to work well together and a flexible package of support can be developed, services can work well. The quality and level of inclusiveness within a family s community - from preschool, extra-curricular activities to playgroups, holiday programmes and churches - is a crucial factor in assessing what works well for a child with a disability and their family. A mixture of home based support, respite or Carer Support, support to access the community or flexible funding packages can be useful. Carer Support For some families the Carer Support system works well as it is flexible and is under the family control. It works particularly well if the carer is a family member who welcomes a small recompense. Individualised Funding Individualised Funding works for some families if their child is eligible. However IF is only available for some disability supports. We support the extension and promotion of Enhanced IF across NZ and for families to be actively educated and guided to use it. Wrap Around Service The Intensive Wraparound service funded by the MOH has achieved good results for families. Unfortunately the Intensive Wraparound Service is only available once all other options have been exhausted, by which stage the family is very stressed. If it were available more easily and earlier, 7

8 there is a greater chance of averting crisis and children not going into residential care or care under S 141. Services have been providing wraparound services throughout the country for adults and are beginning with young people also. One such service will include a house where young people up to the age of 25 (or less depending on the young person) can stay either full time or have respite. The respite will be a booking system so that all families can be supported. There will be programs run in the holidays to support all ages of young people. Parents of the young people will be fully involved with the planning and equipping of the house. The governing committee will be parents. Staff (or a representative for staff) will attend meetings if the parents want them to. 1.3 about anything else that you think would make it easier for these families. Key Worker For some families, or perhaps all families at some stage, there is a need for a key worker or navigator or similar role. Families often struggle to navigate the variety of supports that are available to them and may not have the time or energy to pursue services. We recommend there be someone with a good understanding of disability issues and of services who can walk alongside families and ensure that they have fully explored all options. This key worker role may drop in and out as needed but would be a consistent support that families could rely on providing a prompt response. Many parents say that they would like a one stop shop for all services, especially when they are having difficulty with the divides between MSD, MoH and Ministry of Education processes, funding and services. Child Disability Allowance (CDA) The Child Disability Allowance (CDA) (at time of application) could be a tool to link all families with a key facilitator/worker of supports not a role positioned within MSD but a position within each community as a first port of call to establish an ongoing relationship with each family. If needed this key role could facilitate family meetings, link in with SFs processes or whanau ora well before a family is in crisis. If the CDA was used as a point to link families into ongoing networks of supports and information then the falling rates of CDA uptake and barriers to applying would first need to be rectified. Lack of Options There is a dire need to start early in supporting families in their disability journey. It is beyond frustrating knowing that some families have no clear, constant supports and then witnessing them become exhausted and despairing over time. There is currently no consistent, dedicated respite service for children with multiple disabilities throughout the country. Carers of the elderly usually have access to respite. Carers of children with disabilities have the same level of need. 8

9 There are some positive new initiatives in disability, however all of these are only available in small areas of the country and are in demonstration stages, so progress is painfully slow. There is a need to identify and support current initiatives with the intention to implement them nationwide and allow them to be easily co-ordinated and accessed. It is inaccurate to perceive families reaching breaking point as an event disconnected to the many antecedent events and experiences or that it occurs in a linear fashion. Data could be collected to record the times that families do consider out of home placements, to capture the circumstances which are least enabling of families staying together. This profile of families could be used to identify those families who are more likely to consider an out of home placement. Early intervention and support might avoid an out of home placement, and if it is necessary ensure it is more planned. Caring/consideration for the whole family The parent/carer needs time free from the responsibility for the child to replenish their ability to care. In many families a parent, generally the mother, does not return to paid work, or gives up paid work, in order to care for her child even when the child is at school. This has a significant impact on the family income, future economic security, and her mental health and wellbeing. Many parents with disabled children experience breakdown in their relationship. Regular breaks from the care of their child would allow the parents relationship to be repaired. Sole parents need time away from the child to replenish their adult relationships and extend their ability to care for the child. Regular breaks would contribute to family well-being, allow time for siblings to be nurtured, and could extend the family s ability to care for their child. Children with ACC funding can access a wider range of supports and respite. We have a 2 tiered system which discriminates between children injured by accident and those whose disability is from other, often unknown causes. Carer Support and cost issues - No dedicated trained workforce. People with the required skills are worth more than $75 for a 24 hour period. Respite carers provide care in their own homes, for children with high and complex needs, often with only a reimbursement of expenses. They are not formally employed and therefore do not receive training or support in this challenging role. Even when children are allocated hours at a home care agency rate of payment, there is no allowance for travel so agencies cannot find workers prepared to travel for example, half an hour each way unpaid travel time for 2 hours work a day. Children with Autism Children with autism often need constant supervision; care by someone who understands their needs; many may need a fenced property. Mainstream holiday care and after school care options often are not available to children with autism. Few providers offer specialised care. Section 139; it is hard to find emergency respite for children with disabilities, because there needs to be someone with some knowledge of disability to care for them. Often the regular 9

10 options are full (such as IDEA services respite care). While S139 recognises a need, it does not work in practice. Families have to have exhausted all options and prove they really need this respite and then often there is nowhere for the child to go. Need for access to emergency respite also, in case of an unexpected incident in family life. 2.1 If we were to create a new voluntary out-of-home placement process for disabled children within existing resources, what would this look like and who would be involved? While the focus should be on early supports, and comprehensive and flexible support to keep families and whanau together, there is a need for options when family breakdown occurs. We recommend MSD and MOH investigate better resourcing of family based foster care as an alternative to residential care. All children belong in families and have equal rights to family life, regardless of disability. The UN Convention on the Rights of Persons with Disabilities outlines this. If the situation has reached the stage where a parent can no longer cope with their child s care at home, there needs to be a statutory process in place, with accountability in law, in order to safeguard the wellbeing of the children and families involved. These can be times of great emotional stress and there needs to be involvement of professional workers who can see the situation as objectively as possible and support the people involved to make the best decisions. There also needs to be statutory review involving workers independent from the family, in order to safeguard the rights of the child. The review process needs to include consideration of whether the child is able to return home and what supports would be available if this were to happen so that the family is supported to rebuild and manage their child positively. 2.2 are there any other changes we could make to the CYPF Act that you think would improve the system for providing out-of home placements for severely disabled children? The role of CYF could be expanded to provide more service to families in crisis, but we don t think that changing the Act will improve the system. The family supports should be outside CYF, not within, but if this were to stay the same a more effective CYFs partnership with the families and services that have been set up to provide respite and care for disability would be an improvement. 3.1 is there something we could do differently to protect the rights and interests of disabled children while they are in out of-home placements Skilled Workforce Making sure that carers are fully aware of how to care for the young person, know their needs, and making sure that there are other services financed to create the wraparound care that person needs. Service provision expansion Needs to expand to meet the need for children to be cared for close to their family home. There should be choice of living situations and children should be involved in making the choice to the greatest possible extent. 10

11 Parents need to be supported to maintain regular and close contact with their child and to be able to advocate on their behalf. Wider family members should be supported to visit and continue to include the disabled child in the family circle. Providers need good guidelines on the expectation that family members will continue to be involved in the child s daily life wherever possible and will be involved in decision making. As mentioned above there is limited long term residential facilities the lack of choice. Are the residential services providing best care, are we returning to institutions because the government cannot provide the community and families with enough support and resourcing? Changes to Process/Legislation S 141/142 should be amended so that all children enter care through a S140. To create an alternative pathway for disabled children is discriminatory, in that the current pathway gives less protection to the rights of disabled children. Under a S140 full time residential care would be a time limited for disabled children, just as it is for non-disabled children. At the end of the time limit a home would legally have to be found. At times this is challenging, but positive family placements are found for even the most challenging non-disabled child. The alternative is to leave children in extended care agreements indefinitely. This is not within the original intention of the Act and is not consistent with the UN Convention or a child rights approach. Currently, under a S141 agreement, the decision making power rests with the child s guardians. In many cases families will make decisions in the best interests of their child, but not always, At times families wishes can override what is in the best interests of the child. Also government agencies cannot be relied on to always act in the child s best interests. If a disabled child enters the care system, for whatever reason, they should have independent advocacy (which could be legal or human rights advocacy) and have the same right as every child. Amend S 144 so that all children give their consent to care agreements, regardless of disability, either themselves or through their independent advocate. This consent needs to be a legal requirement, with advocacy being provided by an experienced child rights advocate or a lawyer trained in disability rights. Navigator to walk through and support the family through the S141(S140) process. 3.2 What do you think makes an out of home placement successful for the disabled child and for the disabled child s family and whanau? Placement is most effective when this is well supported and with another family member. However a placement that maintains as much contact as possible between the child and their family, while meeting the child s care needs is also effective. It is important that a placement is accessible for the family, i.e., is not geographically distant. 3.3 What makes it easier for family and whanau to have regular contact with their disabled child while they are in an out of home placement? Funding for costs of travel. Ongoing relationship established with carer and family and time taken to maintain it. 11

12 Flexibility and sensitivity shown by carers to families. More options in more locations. If there is a facility, it needs to be family friendly and have open door policies for the family and whanau. The service would need to include family in planning and decisions around their young person. 3.4 Any other suggestions you may have about how we could improve the process and system around out-of-home placements. Appoint an independent advocate for all children in out-of-home placements. This advocate will work with the child, their family and the provider to ensure that the child s needs are paramount in any arrangement. Increase the number of providers who have S.396 accreditation to allow choice of service provider. Ensure that NASC service co-ordinators and CYF social workers are familiar with the most current processes and are able to give the family accurate information. Improve communication between NASC and CYF and encourage joint support to families. Support NASC service co-ordinators to understand and support parents through relevant processes. 4.1 What could be done to protect the interests of disabled young people during transition? Independent advocacy as detailed in previous sections. Clarifying the funding responsibilities of agencies before the meetings with parents o Too often meeting occur and the Ministries representatives do not want to take responsibility for the transition which is time-consuming, frustrating and confusing for parents. Strengthen processes within and between agencies. Provide a transition plan with the family fully involved, taking them to visit and maintain an on-going relationship with the new out of home placement, where they can call, drop in and review at any time. Services to create meaningful activities to give the person with a disability a sense of wellbeing and self-respect. Reviews where return to family is always considered or anticipated and planned for. Again; having people who know the young person being involved in the process. o Even the most disabled have ways of communicating and this needs to be understood by all involved in his/her care. o Communicating with them may help to make sure that the interest of the young person is being correctly interpreted Forward planning and considering all the options, involving the family in discussions about options and exploring alternatives to residential support. 4.2 What do you think could be done to improve how transitions from outof- home placements are managed? As said in other sections in different ways having the families supported throughout and the child given an independent advocate. 12

13 Having open simple and open communication between the family and the legal/human rights advocates or navigator. More options for community activity, involvement and support during the day for young people with disabilities who are not at school. More time taken in advance to consider and plan for the future, ensuring that other options are considered than simply staying where they are. More involvement of family members, including extended family, in transition planning. References Child Poverty Action Group (2015) disability It shouldn t be this hard : children, poverty and Ministry of Social Development, Minister for Disability Issues (2001) The New Zealand Disability Strategy: Making a World of Difference Whakanui Oranga United Nations (2008) Convention on the Rights of Persons with Disabilities Social Services Committee (2008) Inquiry into the quality of care and service provision for people with disabilities: Report of the Social Services Committee 13