Supported Living & Residential Care – INFORMATION FOR PARENTS
Which living option is best for PWS?
This depends on the individual. Some individuals with PWS are happy to continue living at home with their family, although the family does need to ensure they have enough support, back-up plans in place, and to plan ahead for when they will no longer be there. Other adults with PWS enjoy living with flatmates or in their own home. Residential Care is available in different forms around the world. In New Zealand, group homes are usually small, often with 2-4 residents. They may be PWS specific or have clients with mixed disabilities. Housemates need to be compatible and it does not follow that people with the same syndrome will necessarily get along, although there are some PWS specific homes in New Zealand which are working very well.
As a general rule, regardless of how independent they may seem, people with PWS do need a high level of support to keep them safe. Therefore, without careful management, supported living arrangements can result in major health and safety consequences if supervision is part-time or the level of independence means access to food is possible. The following resources provide a good summary of some of the issues with some useful advice for best practice in supported living.
- Important Considerations for Supported Living and PWS – by PWSA(UK) and Prof Tony Holland
- Residential Care and Supported Living 18 – 25 years – by PWSA(UK)
There are various funding and support options available via your NASC and WINZ that will enable your child to either leave home or remain living at home with as much independence as possible. Families will usually be connected with their NASC already, but at age 16, additional benefits become available, so at this time we recommend families register under a WINZ coordinator who will be able to help check your entitlements. Over time, we suggest families keep asking about eligibility, especially as things change in your child’s life. In some areas there are new disability support options available, but the following living arrangements are possible using some of the current, nationwide funds and supports which are listed in detail beneath.
- LIVING AT HOME – using HCSS and Respite, or IF. Supported Living and the Supported Living Payment or Job Seeker Support may also be available. Funded Family Care is an alternative option which can be used alongside Respite.
- RESIDENTIAL CARE – using the Residential Support Subsidy for accommodation fees and personal allowance, with support topped up by the MOH, depending on level of need. The disability allowance may also be available.
- OWN HOME / FLATTING ARRANGEMENT – using HCSS or IF. Supported Living and the Supported Living Payment or Job Seeker Support may also be available. Individuals may also be entitled to an accommodation supplement dependent on where they live and if their benefit cannot meet rent costs.
HCSS – Home and Community Support Services (MOH via your NASC) – this support is for personal care and household management and is provided by an organisation that has a contract with the Ministry of Health. The provider will prepare a plan including what an individual can do for themselves and what they need a support worker to help with, and when. This can include meals, washing clothes etc. Keeping a person with PWS safe could also come under personal cares.
Respite (MOH via your NASC) – is for carers to take a break. Family feedback has lead to respite becoming more flexible and there are various options available: I Choose (previously Carer Support), Individualised Funding where you employ your own support workers, Home Support which is ‘buddy’ support for a set number of hours per week provided by a contracted service provider, and facility-based respite offered by contracted service providers for whom you will have an annual allocation of days.
Individualised Funding (MOH via your NASC) – gives you choice and control over who provides support, how and when. IF can only be used to purchase HCSS and Respite through support workers – it doesn’t cover personal costs, recreation costs etc. You need an allocation for Home and Community Support Services (household management and personal care) or Respite (I- Choose, facility-based or home support) from the NASC to be eligible. As an employer, you engage your own support workers, through agencies such as My Care, and manage all aspects of service delivery. IF must be used through a Host organisation contracted by MOH to help you manage your responsibilities and administer payments.
Funded Family Care (MOH via your NASC) – allows individuals with disabilities to employ parents or other family members who live with them to provide HCSS if they do not already work full-time. It can be used alongside Respite.
Supported Living (MOH via your NASC) – a support worker provides support at times and places that are agreed. This support is for things like using community facilities, shopping, cooking, budgeting, and is provided by an organisation that has a contract with the Ministry of Health. Supported Living is not intended for HCSS (personal care, household management) or vocational services.
Supported Living Payment (WINZ) – a weekly payment for full-time carers of individuals living at home from age 16 who would otherwise need residential care. Or for individuals who are unable to work 15 hours or more per week as a result of their health condition / disability. Medical information from a doctor is required.
Job Seeker Support (WINZ) – a lesser weekly payment than the SLP which is available from age 18 for those not in employment and looking for a job, or in part-time employment seeking more work, or for those who have a health condition or disability which affects ability to work.
Community Residential Support (MOH & WINZ, via your NASC) – a home-like setting in the community, while receiving support for up to 24 hours a day. This may be a specialised PWS group home or a mixed disabilities group home. Services are supplied by a provider who has a contract with the Ministry of Health – all aspects of support and care are provided. These services are paid for by WINZ benefit (Residential Support Subsidy) and the remainder is paid by MOH. For personal needs, a portion of benefit is retained as a Personal Allowance (approx $65/week). Individuals should also be able to apply for the Disability Allowance. For questions about Disability Allowance and residential care, call 0800 999 779.
Disability Allowance (WINZ) – for regular, ongoing costs because of a disability, such as visits to the doctor or hospital, medicines, travel. The child disability allowance stops at age 18 and the DA starts at age 16, so there is an overlap. Proof of costs (receipts) and a doctor’s statement are required. If other benefits are received, the correct form needs to be completed.
Accommodation Supplement (WINZ) – a weekly payment which helps people with their rent or board.
New Support Options
The disability support system is in the process of changing and a new model is being trialled in some areas. One of the new supports is Choice in Community Living which is designed to enable individuals to live in their own home. It is available through the NASC in Auckland, Waikato, Hutt Valley, Otago and Southland, and support is provided by contracted providers. Another new support is Enhanced Individualised Funding (EIF) which enables users to be more flexible with their IF budget and use it for wider disability supports, rather than just HCSS and Respite. EIF is currently available in the Eastern and Western Bay of Plenty. See the Enabling Good Lives website for further information about transformation of the disability support system.
PREPARING FOR YOUR CHILD LEAVING HOME
We recommend families begin thinking about their child leaving home ahead of time. Leaving home is a major life event and can cause stress for individuals with PWS, particularly if there is a lack of preparation. Families should consider their child’s wants and needs, and then start exploring the options available to them. You may wish to make visits to some of the residential service providers in your area and to trial facility-based respite first. It is a good idea to have a list of questions. Being prepared rather than waiting for a crisis will smooth the transition process.
Families also need to prepare for their child leaving home by securing the support they will need in advance. To do this, start by noting every job or task you do for your child that is above and beyond what you would do for others. Include everything, from help showering to safety in the community to meal preparation.
The PWSA(NZ) offers one day training courses to service providers – you can ask provider organisations if they have had training in the past or would like some training. Please refer them to our training courses page for details of any upcoming courses or to make a training request. Building a good relationship with a service provider is also very important – here are some tips:
- Some Do’s and Don’ts for Improving Parent / Provider Relationships – B J Goff, for PWSA(USA)
PLANNING AHEAD FOR THE FUTURE
Fortunately, with earlier diagnosis and improved healthcare, people with PWS are living longer today. Parents need to plan ahead for when they are no longer here. When writing a will, it is a good idea to set up a trust for your child with PWS and the trustees do not have to be family members. Some families may wish to consider Welfare Guardianship or Enduring Power of Attorney, although this is not essential and the process to obtain Welfare Guardianship depends on your child having a significantly impaired ability to make their own decisions. The aim of guardianship is to protect a person who is vulnerable due to their own actions or the actions of others, so during any ‘tough times’, guardianship which lasts for 3 years may be useful. However, the support of friends and family members in their life and key contact persons for when you are unavailable is usually all that is needed.
- How I make my decisions – a supported decision making tool by People First.
- Family Trusts, Property Managers and Welfare Guardians – A kit to support parents whose son or daughter has a disability – by Tony Banks 2009, Hamilton
- Disability Connect – offer useful seminars on planning for the future (located around Auckland.)
- PWS: Growing Older (Terrance N. James PhD) – available from the PWSA(NZ) Library – a book about quality of life and the aging process which documents the stories of people with PWS who are over the age of 40.
- Aging in PWS: 40+ years – by PWSA(UK)
- Grief and PWS: possible reactions and how to provide support – by Janalee Heinemann, Director of Research and Medical Affairs PWSA(USA). Reprinted with permission from PWSA(USA).
FURTHER EDUCATION / SUPPORTED EMPLOYMENT / VOCATIONAL OPPORTUNITIES…
Please refer to our transition page for information about education. Along with other useful community organisations, you will find some of the agencies who can provide supported employment listed on our NZ Links and Resources page. The following resources may also be useful:
- Education and Social Issues for Adolescents with PWS – Professor B.J. Goff
- Social Life and Relationships: 18 – 25 years – by the PWSA(UK)
- Behaviour Management 18-25 years – by the PWSA(UK)
- Understanding PWS – Accessing the Community – by PWSA Australia
- A practical guide to supporting people with PWS in the workplace, day program or volunteer setting – by PWSA Australia
- People with PWS and Work – Best Practice Guidelines for Employers – by PWSA(UK)
- Management of PWS in the Work Setting – brochure / pamphlet to download by PWSA(USA). We also have copies of the new version and can post one to you.
- Increase Success in the Workplace: Limit Access to Food (for employers) – by Prader-Willi California Foundation