What is Respite for special needs children?

Respite for a special needs child is something that has changed over the years.

In the past what was called respite was closer to re-homing a child that wasn’t socially acceptable.

Sadly today, there are still some adults with a disability who remember this time.

I wish it wasn’t so but it did happen. We are so lucky and blessed that our children never will be exposed to that type of ‘respite.’

Instead, respite at a hospice for many children is like an epic sleepover. Not unlike what their siblings get to experience with friends or grandparents.

Or some families get respite at home, so mum and dad can duck out for a date. More like having a friend hang out with your child for a few hours.

Ultimately respite for special needs children means someone else will take over caring for your child. So you can take a well-deserved break from caring responsibilities.

Respite comes in different forms:

• A couple of hours with a support worker coming into your home to provide respite for a special needs child. This is by far the most common and accessible for most –not all– families.

• Going to a respite hospice, like a retreat with appropriately qualified staff.
  Depending on your child’s needs this hospice might have a medical team, nursing staff. Therapists – like art, music, physio, OT etc. As well as support workers and volunteers.

• On occasion, the situation requires hospital admissions for respite. Sometimes when parents cannot care for their child at all. Because of events out of their control, the only option left is for the child to be admitted to a hospital for respite. Where they can provide care and supervision. 
  
  It’s far from ideal, hospitals are not equipped to deal with needs outside the medical care of their patients. The child may get ignored if other patients require a lot of medical attention. 
  
  However, a child with complex medical needs may be safest in a hospital. Children’s hospitals would take this in their stride much more easily than other hospitals.

• Foster care – can be both short and long term. 
  
  It is not only for respite. More for families at risk of neglect, unintentional or otherwise, sometimes affecting the siblings, not just the special needs child. 
  
  I have heard of it being used for 6-12 months while families make changes to jobs and home arrangements. They sort out these larger issues affecting their ability to provide care for there child. Then they take back the care of their child. 
  
  In some cases, it ends up being transitioned to a permanent situation. When families realise they simply cannot take care of all their responsibilities and care for the child.

Why you need respite

Many families, especially parents need respite time for much-needed self-care. Simple things like uninterrupted sleep, doing the grocery shopping, going out for a girls night, or a date.

For most parents caring for typical children let alone one with additional needs ‘me time’ is pretty much fantasy.

It’s not always easy

What I have learnt over-time is that it only has to stay fantasy if we let it.
Some may only use it when circumstances force them to.

Families that choose this path often focus on things like ‘no one could ever meet my child’s needs the way we can.’ Or ‘if something happened and I wasn’t there I wouldn’t forgive myself.’

Sometimes it is different more like:
‘I don’t want to miss a moment of the time I’ve got.’

All of the above may or may not be completely valid.

However, if those families have an emergency one day and they have no choice, the arrangements will be far from ideal.

In these cases things like their own medical emergencies, and other family problems. Things totally out of their control remove their ability to provide care for their child.

Do it on your terms

I would advise any family to do it on their terms first.

Don’t let it come to that.

The saying ‘It takes a village to raise a child’ is even more true for a special needs child.

You are not superhuman. You cannot expect more of yourself with more pressures and responsibility than a parent with only typical children would.

Use respite for self-care

It is my experience that having a child with a complex medical condition meant that ALL other areas of life could suffer.

Health – mental, physical, spiritual

Relationships – spouse, children, extended family and friends

Take time for yourself, and the others in your family. Respite will make you better able to care for your special needs child.

You will enjoy it more and have less chance of burnout. By meeting your needs you will help your child, rested calm and in control.

Finding the right fit

Hospice Care in a lot of cases is only available to a small portion of children.

In Victoria, Australia we have the Very Special Kids hospice – which is available only to children with life-limiting conditions.

So most families must juggle making support workers fit their respite needs.

Finding the right support worker to provide respite for special needs child is sometimes a process of trial and error.

Ask in your network for recommendations about agencies and support workers. Do phone interviews, ask for their background and references. Meet them in person, do trial shifts.

Come up with a system that works to bring them up to speed on your child’s needs. Do enough shifts with them to know that they have the skills to handle each task.

This luxury is only available to families that are proactive about respite. Waiting for an emergency will take it out of their hands. 

Funding

Respite care can be costly.

Especially when you need your respite provider to have certain qualifications to be able to provide care.

Many families can source funding to cover these costs.

NDIS

Australia’s national disability insurance scheme.

Most support workers are funded for respite by this scheme.

Many families find it difficult to access as some would argue that caring for a child is the parents’ responsibility.

If you hear this response take a moment:

Most children have the luxury of sleepovers with grandparents, & friends.

They go on play dates or go to daycare, or ballet or scouts.

Parents might be able to ask a neighbour or friend’s teenager to watch the kids for a few hours.

All those moments in time add up for natural breaks for carers. Breaks that simply don’t exist for many children with additional needs.

Carers associations

Our state has Carer’s Victoria.

I was twice able to top up our funding with temporary grants they offered.

We had some funding. But sometimes I needed some extra help to get away for the weekend. They were able to fill some gaps.

Lions club, Variety

These are charitable foundations that will sometimes offer one-off funding blocks to families.

The best way to find these grants is to ask families in your area if they have heard of any.

Social workers and other supports coordinators may also have specifics for your local area.

Funded Hospices

In Victoria, we have Very Special Kids.

In Queensland, they have Hummingbird house.

New South Wales has Bear Cottage.

The hospices’ provide respite for children who are not expected to reach adulthood. End of life care is something they offer too.

The respite they provide is without charge to the families, they receive their funding from government and private donations.

Hospital Funding

Two other ways we received funding were through our hospital.

We found The Royal Children’s Hospital’s complex care program was our most consistent source of respite before the NDIS.

Complex care was aware of the nature and high level of care that Matthew required. So they gave him their highest level of funding.

As well as complex care, their palliative care department has been part of Matthew’s life since he was only 12 months old. Once or twice they were able to provide us with very specific packages to fill small gaps.

If hospitals have these kinds of funding available, I would ask the social worker. They are the best point of contact to find out if this is something that you might be eligible for.