‘Choice and Control’ from a parents perspective

Therapist with young child playing with a toyI was invited to provide some insight into what “Choice and Control” means for myself, my family and especially our four year old daughter.

Our daughter was born a seemingly healthy little girl. At around 6 months of age, alarms bells starting ringing when she was still not bearing weight through her legs, not making any effort to sit and overall was developmentally behind other babies of a similar age. She finally sat at 11months but remained uninterested in her surroundings.

At 15 months our daughter was diagnosed with epilepsy after an investigative EEG and a few months later she started to lose a lot of the skills she had developed. She started falling when sitting, was not attempting any words and was losing the use of her hands. After several blood tests and scans she was diagnosed with a genetic neuromuscular condition just after her second birthday.

Our world came crashing down. We were now faced with prospect of never hearing our daughter’s voice, never seeing her take her first steps and her being reliant on her family for every aspect of her daily needs.

We had already been made eligible for Early Intervention through disability services when we received our daughter’s diagnosis. We had accessed private therapists prior to this also. To be honest we tried a lot of different therapies for her in the beginning, trying to find something that would help our daughter but over time have realized that doing lots of therapy is not always the answer. We have become more experienced at knowing what’s important to her overall quality of life and making this a priority in directing her care.

When I was asked to present my thoughts on “Consumer Directed Care” I must admit I drew a bit of a blank. I had actually never heard this term or had it spoken of in relation to our daughter’s therapy and services. While I could make a pretty good guess at what was involved, I turned to trusty “Google” and did a brief read on what the term meant. So things like the following came up:

  • Enhancing client autonomy
  • Client control over the care they are to receive
  • Greater say in the planning of care and delivery of services

It all sounded pretty wonderful in theory but did this reflect my experience since she was made eligible for disability services? – Unfortunately not as much as I would hope. While reading literature on “Consumer Directed Care”, there seemed to be a very strong focus in the Aged Care sector but I could not find anything in relation to adopting this framework with children. Maybe it is just hard to find or maybe it just doesn’t formally exist.

When our daughter was made eligible for Early Intervention through disability services we were given a list of providers whom we could choose from to provide her therapy. So after looking into different providers I chose two from the list and called; both had wait-lists of a year. So I started the ring around to find a provider that could start working with her straight away. I couldn’t wait a year.

My little girl was 16 months and not bearing weight through her legs, not babbling, unable to crawl and was starting to lose control of her hands. She was already on wait-lists of up to 9 months through the State Development Centre so these services were never accessed. So did I have a choice of therapy provider – yes but not really; I ended up just going with the first agency that could take us on straight away.

This has changed over time though and we have had more control. We are currently about to be transferred to our third agency as our daughter’s needs are significantly greater than when we first accessed early intervention services. We have been able to apply to an agency that we feel is a better fit for her as she transitions to kindy next year. We have only been able to make these decisions as our knowledge of the system and availability of its resources has developed over time and being fully involved in knowing what therapy suits our daughter.

Generally therapy has taken on a family centered approach. I have come to loathe this term. I understand this term is supposed to give myself and my family the means to have a say in her therapy and the choice and control we are talking about but I feel it mostly just swings too far in one direction – it overwhelms me at times!

There is nothing worse than having therapists come to your house and say: “So what would you like to do today?”

Mmm… so in between caring for my totally dependent child and my other 2 children, plus keeping house and working I was supposed to think of activities therapists could do with my daughter?

Now I am pretty proactive in researching what is best practice and therapy in children with my daughter’s condition but I am not going to lie – it is exhausting! Sometimes I just want someone to come into a room and say: “So I was doing some reading on your daughter’s syndrome and I thought this might work” or “let’s try this activity I came across”.

I don’t mind if it doesn’t work – the fact that someone is thinking about her and what might help her makes me grateful. I think for us the best model of therapy is when there is a nice balance between advocating for our daughter while allowing input and supporting us in directing her therapy.

This also brings me to my next point – I understand that funding isn’t what it should be and therapists are stretched. So my ideal for my daughter’s therapy might just not be feasibly possible. I now find myself ringing suppliers or providers myself and organizing appointments that fit in with our busy schedule. If I wait for a time that suits suppliers and therapists I am waiting weeks just for an initial appointment. I make appointments, speak to reps and others experienced in required equipment as I can do it at a time that suits my family. But my ability to do this has only come with my forced experience in this disability services journey.

I have assumed more control in being hands on with her equipment needs and therapy but would I have been able to do this two years ago? No way and I feel for families that don’t have the insight or education to be able to make these informed decisions.

And this is I think the main point I want to get across today. Giving families choice and control is great in theory but we need to make sure that they are well equipped to do so. To be honest, having total control over deciding what is best and coordinating your child’s care is a pretty scary prospect. I think in my perfect world I would be able to choose therapists that fit well with my daughter’s needs, therapists that are educated or are willing to research best practice and we are motivated to work together to provide therapy that makes a difference in my daughter’s life.

I have over time also felt a bit in the dark as to what a service provider is funded for to provide therapy. I think this should be transparent to families to allow a more satisfying collaborative approach. For example my current service provider notified me recently that we are entitled to two hours of therapy a week. Now this two hours includes travel time for therapists, appointments, funding applications and hands on therapy. If I had known the time restraints on my therapists and we were able to have more control, I would have appreciated a more structured program, allowing for these time constraints so we could concentrate on those things that are important for my daughter at a particular time.

For example our daughter has regular Botox therapy to relieve the constant pull of her tight muscles – the weeks prior to her injections she is extremely tight and regular stretching sessions would benefit her. I know the date of her injections ahead of time so an increase in physio nearing the end of her cycle could be realistically focused on in a proposed plan of treatment.

Having therapists sit in appointments isn’t a priority to me when I could feed this information back to them. Having hands on/ face to face time with therapists is much more beneficial as everyone gets to know each other and their strengths and weaknesses. But the reality is, is that often disability service therapists are stuck in rooms writing CAEP applications especially if your child requires a lot of support like my daughter does and therapy goes out the window.

Unfortunately, from what I can gather is the child’s level of disability is not taken into account when these hours are allocated to a service provider making it difficult to provide individualized care to meet all of a child’s needs. But maybe a more structured plan allocating what hours are available would allow therapists to look ahead and educate themselves on what we as a family see as important for our daughter relating to set outcomes.

Due to these time constraints, availability and experience of therapists, we have accessed therapy outside our DSC provider. We have been very fortunate to be able to access Betterstart funding. For those not familiar with Betterstart, it is a funding initiative given to children with certain conditions to use for early intervention services up until the age of seven. To be honest, Betterstart funding has enabled us to have the best opportunity of Consumer Directed Care. I have been able to choose therapists which understand our daughter and meet her needs. They specialize in therapy that is important to her quality of life and we choose when and how often we see them.

There is no way we could afford these private therapists and contact time would be vastly reduced if it wasn’t for this funding allocated to us for early intervention therapy. I am so grateful everyday that I can coordinate this for our daughter but I am very worried for the future when this funding runs out and we can no longer access therapy the way we do now.

Another difficult part of our journey to date has been the ability to access respite services for our daughter. When I had my third daughter last October we knew that it was going to be difficult to meet all of our daughter’s needs while caring for a newborn. We decided to investigate our options.

Initially we approached HACC (Home and Community Care) and were told that respite was unlikely due to her age. They met with us anyway and the first question we were asked was how much we earn. Now there is nothing more heartbreaking when this is what matters the most. We are a middle income household but we were told in no uncertain terms we would not get any help with funding for respite. It took my husband complaining to DSC and we were eventually granted four hours of respite a week.

What upsets me the most about this scenario is that money matters more than the level of disability. My daughter cannot do anything for herself and is medically fragile. And unfortunately for us she got very sick the day I got home from hospital and was in hospital the following week with no supports in place. When we were able to finally use the four hours allocated to us we constantly had respite workers not show up and then workers taken away from us that had gotten to know her.

We became to realize that this service was not set up children. Having regular supports is important when children can be frequently unwell like our daughter and any four year old child is not going to be comfortable with a different person each visit attending to very personal aspects of their care. Although my daughter is trapped in a body that doesn’t work she is totally with it and I wouldn’t expect her to be cared for in a service that runs this way. I really hope that in the future there is consideration taken to the importance of funding for respite and support allocated on the basis of disability and not on what a family earns and allowing families to use funding for support workers that they choose to work with their children.

So I really hope that I haven’t portrayed too bleak a picture. I hope that my story and experience has given insight into the reality of what consumer directed care looks like in our world.

I think the main points I would suggest to service providers to allow successful choice and control for families are:

  • To educate parents and carers to make informed decisions regarding therapy. Only that way would “Consumer Directed Care” be successful when working with children.
  • There needs to be a balance between therapists led advocacy and parental control so that parents are not overwhelmed at the thought of coordinating their child’s therapy/ equipment needs. Expecting too much control on the family’s behalf could be detrimental. I like to have control to a degree but I would like others to know my daughter well enough to make informed decisions on her therapy and care in conjunction with me.
  • Families with children with complex disabilities are busy people. So we need therapists that understand the demand and are there to help us along an often difficult journey as much as needed.
  • The closest I feel we currently have to “Consumer Directed Care” is through utilizing our Better Start funding. By using this funding I am at a point now where I have some wonderful therapists working with my daughter who knows she is bright little girl that just happens to have a debilitating condition and they advocate for her as much as possible.

*Please note that the image portrayed above is not representative of those in this story to maintain their anonymity.


The Independent Living Centre WA (ILC) is a registered National Disability Insurance Scheme (NDIS) provider. NDIS and WA NDIS My Way participants can access our services.

As part of people’s pre-planning process, the ILC offers a free information and advisory service to help people consider assistive equipment, technology and home modification possibilities. The ILC also provides a range of other Private Options services.

It is our aim to help people to be more independent and to better manage tasks at home, school, work or in the wider community through the use of assistive equipment, technology and home modifications.

 

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