What is the future of caring for our ADULT disabled family members in the community

I was horrified to read an article ‘One of the worst: Care worker tormented, beat disabled residents’, a few days ago.

You can read it here, https://www.stuff.co.nz/national/130588099/one-of-the-worst-care-worker-tormented-beat-disabled-residents?fbclid=IwAR1wXy9R_CaGv2zDPxeiqOlZBppIyPS5HjVfUa9uUL3f6SaRPeuIh_7CXqU.

Every time I see cases like this it makes my stomach turn inside out with fear that when Phil and I are gone, this could happen to our son. For many people they may read this article, feel aghast, angry and disgusted, but because it doesn’t personally affect them and their family, they might choose to turn away from the pain, move on, read or do something more pleasant and that’s the end of the story. But for me, and other families raising a high and complex needs and non verbal child, when you read this, you can’t just move on – because you know that it could have easily been your child that was a victim. You can’t let go of the very real problem out there, that people can do horrible things to vulnerable people and that even though it is 2022, and there are supposed to be measures in place to stop abuse in care happening, it still exists.

This story highlights the awful reality of people preying on the most vulnerable, and shows that there are still not enough measures and checks in place to prevent these acts happening in residential care services. In case you are not familiar with residential care, let me briefly explain the concept and a tiny bit of history about residential care.

A person with intellectual, physical or sensory disabilities (or all three) that is UNDER 65. may be eligible to live in a home-like setting in their community, while receiving support for up to 24 hours a day. Generally, people move into residential care when either their family can no longer continue to care for them, or their family have passed away. Residential care for a child is often a last alternative for families who are burnt out and exhausted, or who have health problems of their own, or simply can no longer manage the level of care with the supports funded in a home/family setting. It is explained on the MOH page here: https://www.health.govt.nz/your-health/services-and-support/disability-services/types-disability-support/community-residential-support-services.

Residential care, now also known as residential community support was designed as an improved alternative to institutions that were abolished in the 1970s and 1980s.Taking away institutions while a good and right thing to do, has given New Zealand an ongoing and different challenge of how to provide safe and ongoing care ‘affordably’ within the community. Without institutions, New Zealand had to develop new ways to house people with disabilities that had no family to care for them and/or would have been intitutionalised in the past. Options were created for those people without family to live in a disabled village setting or to share a home with other disabled people. Since this time this model has stayed in place in varying forms with providers such as IDEA services or Spectrum Care holding the bulk of the contracts from government for these services.

In addition to residential care, families were now able to keep their high needs children/adults living at home with them. At this time we saw support such as carer support. With the history of abuse in institutions, it was a big relief that they were out of the picture, and it was celebrated that disabled people could be reunitied with their families and in the community. Unfortunately, while this appears as the best solution for all, there was not enough consideration given to how to support the families adequately to avoid burnout. There was also not enough consideration given to what would happen when/if the disabled person wanted to live apart from their parents, as would happen in an normal life stage cycle.

We now have many Mums and/or Dads caring fulltime, without breaks, for their adult children, who are in their 30’s to 50’s with high needs. These parents may feel grateful that they could keep their children from an institution, but now find themselves well into their retirement age, still needing to bathe, dress, feed and care for their adult children. This is of course still feels better for both the family and the person with a disability, than an institution. But parent wellbeing is put under immense strain, and should the family be unable to carry on or die, they are frightened of what residential care would bring.

When it comes down to it, health and disability budgets were never increased enough to operate effectively when institutions were closed. The solution was to underfund families and residential care in order to spread the load. Institutions had economies of scale and supervision, equipment, overheads and staff were shared among the residents. With people in smaller homes or living with family the funding cost and number of workers needed to increase. The most obvious cost saving is that supervision hours all residents can be shared in an institution. Instead, support hours were (and still are) calculated based on time taken for personal cares and household management. There is generally no allowance for supervision time and this is where the underfunding makes a significant impact in both residential care and in home care.

Not only, was supervision time not budgeted for, we have seen successive governments in recent times trying to minimise increases in disability budgets via Needs Assessment and Service coordinators (NASCs), resulting in n a growing gap in support hours for families and many cutbacks in residential care services. Add to this a huge workforce shortage, both due to Covid and a lack of forward thinking, people not seeing disability care as a worthwhile career and we have a huge problem both in the current residential care sector and for our families. This does not and can never be an excuse for abuse in care, but what it does bring to the forefront, is that this continues to happen, because there are no checks in place to ensure the complete safety of our most vulnerable.

Today, in 2022, we have a variety of schemes allowing disabled family members to be supported at home, including one such scheme, known as Individualised funding (IF). This was hailed as a win for both disabled people and their families, allowing them choice and control over their lives, but did not allow families to be paid for care of their adult child (which many were doing). Another fight ensued which resulted in the introduction of Family funded care, allowing parents of children over the age of 16 years to be paid a minimum wage for the care of their child. Better than what it was, but still less than what was needed. After a lot of work by a group of parents, the pay of parents was then increased to match the carer pay equity, as it was discrimination based on family status to be paid a lesser amount. We have made progress – but is is enough?

We have a government undergoing both a disability system transformation, an overhaul of the health system, and a new Ministry for Disabled Persons (Whaikaha). We have residential care options – but the demand exceeds the supply and there is a fear surrounding how people will be treated. More recently there have been various trusts or communities of people setting up smaller or singular homes together, under family governance models or teaming with a provider to deliver their own forms of residential care. People are trying to find ways to deliver care for the lifetime of their adult children that is safe, inclusive and enabling a good life in the community, but it is not easy.

In my lifetime, I have seen progress and change but we have got a long way to go.

If you have read earlier blog posts, you will know that we have been looking at next steps towards independence for our son. But this year, after many phone calls, conversations and meetings, we have not been able to source or find a way forward that makes all of us happy and satisfied. For this reason, our decision will be that he will continue to live with us, but we will try to find a way from him to have some independence as a stepping stone. How we will do this is to sell our home and find another place to live where we can have part of the house as his own – ideally a granny flat situation, but if this is not in budget at the minimum a studio/rumpus area.

From this position, I want to work on his future, for when we can no longer continue to care for him, or we have passed on. For this to happen, here are four changes to the system I believe might make a difference:

An updated and holistic needs assesment that looks at the whole family. A needs assessment takes place with the disabled person and/or family (depending on level of ability) to apply for funding support. The current needs assessment process focuses largely on what the disabled person is ‘unable’ to do. From the list of physical/intellectual/sensory impairments it is decided how many hours a person can receive for personal care – this is for things like bathing, feeding, self-cares. Once a person is an adult (16-18 +), then the family is not expected to do all of the household duties a child peer with regular abilities would do, so there may be an allocation for what is called household management – this is for things like hanging the washing, doing groceries, cleaning areas that are too difficult for the person to manage. As a guideline, a high needs person, may receive up to 21 hours per week for personal cares, and a few hours per week for household management. Of late, a very high needs person may get an allocation to pay a family member up to 40 hours per week – not MORE, because it is a society norm here in New Zealand that working more than 40 hours per week is not good for your wellbeing. The needs assessment needs to shift to focus on what the disabled person can do, and how to support them to do the best they can, and to look at the family unit as a whole.

The Ministry to look at allocations of support for supervision time and acknowledgement that there are 168 hours in a week that need to be covered. If a person requires full-time supervision and cannot be left unattended, because of intellectual disability, for safety reasons, because they have seizures (just to name a few examples) – the family is expected to take care of the balance of time – this is often referred to as natural support (and would include siblings, grandparents,cousins). In reality, natural support is supervision time that is not being funded. This means the family is often ON CALL in their home, for the remaining hours which could be as much as 120 hours per week. Now remember, that if you are a paid family carer getting 40 hours pay per week (because you can not actually go and get a different job because you are needed at home), then you are effectively getting paid for around one quarter of the time you are responsible for that person.

Now, looking at these numbers, you may understand that even in a two parent family, this would be a big load to carry. But there are many Mums and Dads, doing this alone. Imagine being a parent raising a very high needs adult child ON YOUR OWN. By now, if you know the system, you may be saying, “hey, what about respite?”.

An increase in out of home respite services funded by government

Respite, is another form of support for the ‘family’ to take a break from the responsibilities of caring. This is a third source of funding available to enable the full time carer to take a break. Respite funding three main ways – pay a support worker so you get a break, pay a residential facility for respite care (disabled person goes to that facility e.g. Wilson home), purchase a support that gives you a break. Respite is there to help you keep going, so you don’t burn out. The biggest problem with this is that many of these options are not available, for example if you live in a rural area, there may not be a respite facility, or qualified support workers near. Even in urban areas, there is an immense shortage of quality staff who can do this work, and that is if you can compete with the overloaded health system to get workers. Many families simply will not use a residential respite facility because it doesn’t fit their cultural values or they are scared of abuse, and can you blame them. For us, right now, from the age of 21 years we will have NO option for residential respite – because our sons needs exceed the capability of respite homes, and the only option is to put him in an aged care facility that has nursing support – and we just can’t do that.

Increase the healthcare workforce – perhaps the most difficult right now due to a worldwide shortage.

How this all relates to the article I shared earlier, is that disabled people often end up at risk in residential care because there is not enough support given to families with high and complex needs children and adults. Support includes funding, quality workforce, choice of respite options and available services to meet the needs of disabled people and their families. Families will burn out or may die before their children and both the disabled person and the family deserve better options than the current system gives.

In our situation, because of chronic health and behaviour challenges for our son, he receives additional support from our DHB (now Te Whatu Ora) to provide extra supervison hours – this has enabled us to sustain him to live at home until now and to have a budget to employ support workers (if we can find them). But, I know there are many families who have not been supported this way, and for us, even with the ‘funding’ we do not have a miraculous solution, as we have to train, and retrain, fill shortfalls, recruit, live with other people in our house almost all the time. Our only breaks and the way we keep going is that, firstly, we have stay together and share the load, and secondly we have used out of home residential respite since Mitchell was 8 years old. Without respite breaks we simply could not keep going.

These are just some of the changes I would like to see. There are many more, and I acknowledge what I want to see may not be the same as the next person. But, I am writing this post today, just to put it out there – that abuse in care is still going on, and turning away from it is not going to make it go away. If you have been wondering how/why people end up in residential care, I hope that some of what I have explained leads you to understand that it is often a last resort or desperate choice.

If we can do our best to improve the community supports to families, maybe we can reduce the need for residential care, but realistically it is not going to be eliminated. Therefore, please let the justice system provide a harsh penalty for the offenders who are proven guilty, and I ask that providers who are empowered to care for our most vulnerable to put checks and monitoring in place to ensure this doesn’t continue to happen.

My heart breaks.

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