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Vicki Skelley is a permanent carer who was looking to find a way to look forward to brighten her granddaughters future after a bleak FASD diagnosis. Vicki wanted to support her granddaughter with a best friend, and also find a way to make an invisible array of disabilities visible to others. The solution came in the form of Zara, a beautiful Italian Lagotto Romagnolo, a type of non shedding poodle, trained as an assistance dog by DogsforLife. Vicki learned that you don't just turn up and receive a fully trained assistance dog. It involves weekly training with her granddaughter and a variety of dogs. Weekly sessions of an hour each following many rules, such as toileting off the property to picking up after the dog. All of this was her granddaughters responsibility, not Vicki's. An extra challenge when one has a SPD diagnosis too! Did they succeed? Did they get funding assistance or NDIS support? Listen in or read the transcript to find out.
00:00 - Start 00:40 - We wanted an assistance dog to help with making hidden disabilities visible and to support my granddaughter with ASD, ADHD, SPD, LD, trauma, anxiety, depression, coordination and FASD. 03:10 - Our assistance dog is a Lagotto Romagnolo, similar to a large poodle, and came to live with us at 14 months old, after she was raised by a foster family. She goes to appointments, like the dentist, and the shopping centre with my granddaughter. 05:25 - The training program is two years long and weekly. OT and Psychologists from Dogs4Life observed Zara with their trained assistance dogs and set out in a contract what they could do for us. 12:09 - You can chose smaller dogs if they are suitable to train, but Dogs4Life mainly work with 2 dog breeds and mainly females. They work with Lagottos or Labradors. 13:14 - I chose Dogs4Life because I did research and made a connection at a community fair with a Dogs4Life dog trainer. 14:36 - It costs around $40,000 for an assistance dog in addition to food, medical and maintenance. 16:44 - You work with many dogs over 2 years and then chose the dog that's the best fit for you. Dogs4Life trained Lagottos and Labradors and we chose Lagottos due to their high energy. 19:42 - Don't start too young - your child needs to be responsible for the dog. 21:51 - The child is the dog handler, not the carer, and has to feed, water, toilet the dog daily. 26:25 - The benefits are many: mental health and wellbeing, having a best friend and sense of purpose. 29:02 - The hardest challenge is when the dog first comes to live with you. So many rules such as toileting off the property and its not allowed to eat scraps. 34:54 - Assistance dog training differs to dog therapy training. Your dog is specifically trained to suit your exact needs and is covered by a Public Access Test so you can take it anywhere. 39:58 - You can live anywhere with an assistance dog. Its your right. 41:55 - NDIS Support - Make it a goal and be prepared for a two year appeal process 47:16 An assistance dog does not replace therapy.
This is Sonia Wagner, representing PCA Families in one of our recordings that capture lived experience and best practice research-based learning that assist kinship, permanent and adoptive parents/carers in supporting young people. PCA Families has a zero tolerance of child abuse. I would like to acknowledge the traditional custodians of the land on which we meet and pay respect to elders past and present and express our intention to move together to a place of justice and partnership.
Today we are discussing dog therapy and the therapeutic dog assistance training process with Vicki Skelley. Vicki is a permanent carer who has done the work with her granddaughter and her gorgeous dog companion Zara.
Welcome Vicki.
00: 40 Can you tell us a little bit about your granddaughter and what led you to look at getting a specially trained dog for therapeutic support?
My granddaughter came to live with me when she was 22 months old and is now 12.5 years old. Over that period she was diagnosed with various disabilities that weren’t there when she was 22 months old. That was a long process right up until about the age of 9. She has ASD, ADHD, SPD, coordination disorder, learning disabilities, early childhood trauma, anxiety, depression and the main diagnosis and the latest diagnosis, Fetal Alcohol Spectrum Disorder (FASD). The reason I started looking at assistance dogs was because of her invisible disabilities. They weren’t present on the outside to others until getting to know the person. I got to a point that I felt I cant have it tattooed on her forehead. How do we alert others? That is how some of those behaviours associated with those disabilities come out. Socially they don’t have the capacity to relay what they want. The anxiety level is probably already quite high. Emotional regulation. So it was really important to me about how to move forward in the future to be able to continue to go out into the community and make other people aware straight away that this person has a disability and may need some extra help.
03:10 You now have a specially trained dog, Zara in your life. Can you tell us about Zara – what sort of dog is she and what does she do day to day?
Zara is a Lagotto Romagnolo, which is an Italian breed of dogs, similar to a larger poodle, so a medium sized dog and she is non shedding. She came to live with us when she was 14 months old. Prior to that she was with a foster family. She supports my granddaughter by giving her a sense of purpose, for instance getting out of bed. There is motivation as well. She supports her emotionally such as just by laying with her around the house. She gives her exercise because you have to go for walks. That might not just be walks it might be going to the park for a bit of ball play. She supports her going to appointments. My granddaughter doesn’t like the dentist so she goes to the dentist. She supports her when we go to the shopping centre because of over sensory and anxiety, everything kicks in. While she is at the shopping centre, my granddaughters focus is on the dog so it takes the focus off what is going on around her. And that also alerts other people in the community when we are out and about that this person has a disability.
05:25 Can you tell us about the training program that you went through at Dogs 4 Life to make this possible? I understand you don’t just turn up and receive a fully trained dog? What dog breed options did you have to choose from?
It is a long process. At the start I thought why is this so long, can we not just get a fully trained assistance dog and off we go. Being at the other end and now having a dog I now understand why and the process. Once I started researching assistance dogs I decided to go with Dogs4Life. You go online and complete a form and disclose disabilities, behaviours, therapy you are doing, reasons why you think an assistance dog will help you. Dogs4Life then contacted me and they do a home visit with their own psychologist. They came out with a fully trained assistance dog and do an assessment. A meeting in your home – a fairly laid back meeting on the couch. For instance the dog was sitting on my granddaugheters lap. The psychologist at that point if I look back was assessing what was going on with my granddaughter and the dog, what interactions were happening. She was fairly laid back but taking lots of notes. Dogs4Life also have an OT who has a dog. She also came out and did an assessment with the dog at home. Very similar taking lots of notes. They obviously get back and have a pow wow and decide if an assistance dog is going to be a fit for this family and the child. They then send you a contract that is very in depth and tells you how that dog is going to support your child. What they can do.
That is just the start of the program and if you accept the contract you move on to weekly dog training sessions for an hour with a trainer through Dogs4life. They bring a fully trained assistance dog with them and that’s for 2 years. That might start off in your home, maybe the first few sessions, getting used to the whole comfort thing with a dog. That moves out into the community with small slow baby steps. That might be a walk around the block. Then we might start going around the block to the park for some play. You are also concentrating on crossing roads, how you cross roads. The dogs are trained to anchor as soon as you get to the end of the footpath anyway. My granddaughter was oblivious to those types of things. She would just walk out. It was really good in that respect. You move forward to going to shopping centres and going up and down lifts. Dogs cant use escalators so that was another fear we had to overcome as my granddaughter hates lifts. It’s not safe for the dog to go up the escalator with a dog. Going on public transport,all the aspectsof going out, going to the shopping center, going to the supermarket.
The modules are up to the trainer. There is no set training program that was given to us. Im sure the trainer has a set program from Dogs4Life that they follow as to yes we are ready for the next step. If you cant negotiate walking around the block and stopping, You have to learn how to walk the dog, you to have a loose lead. The dog walks on the left side. They have to become second nature to move to the next step.
With my granddaughters disability, with the FASD, which is permanent brain damage, her brain is quite short circuit on most days, and she doesn’t have a memory.. So for her its like groundhog day every day. I can only imagine what it is like for her – very frustrating. So everything we do is about consistency, routine, same same and so that she learns it as an action rather than a memory.
12:09 Did you have different dog breed options to choose from as part of that process?
Dogs4Life mainly purchase Lagotto’s or Labrador’s, mainly females. Females are probably a little bit more settled earlier in age than males do. They have worked with some males but predominantly its those two breeds and they are females. Saying that, they will, if a particular person has a preference for a type of dog, such as a really small dog, they can train different dog breeds if their suitable to be trained for the disability.
13:14 How did you choose Dogs4Life?
I was looking into it and then I went to one of those community centre open days where they had all these kind of different therapies there and took the girls. There was actually a trainer there from Dogs4Life. She had a little stall setup. Initially I thought she was someone with a disability with an assistance dog. I went over and found out she was a trainer with Dogs4Life and she gave me some information and she has been our trainer for the past 2.5 years. I did look at some of the other programs. The programs and prices are all basically the same. I think because I made that connection I went with Dogs4Life.
14:36 What are the costs involved?
About $40,000 all up life long. When you get an assistance dog with Dogs4Life, they are there for life. That includes all their training, the weekly training for 2 years, the dog because they purchase the dog, the foster family training. That’s not the food, medical or other costs. It covers that before you get the dog, such as when its with the foster family as the foster family don’t pay anything. I buy the food and if I have to take her to the vet I cover that such as her yearly injections. I have had to take her to the vet once before. I pay for the grooming as she has that type of poodle fur that needs to be clipped. However, if you are lucky enough NDIS do pay for assistance dog maintenance of around $2,400 per year. Don’t quote me on that! I haven’t personally managed to get that yet. I need to go in for the fight on that one.
16:44 Would you recommend choosing the program then the dog or vica versa? What age would you recommend doing this?
With Dogs4Life you are working with Lagottos and Labradors over that 2 year period. You don’t just work with one dog. We probably worked with 8 to 10 different dogs over that period of 2 years. We got to see the different personalities between the two dogs. The Lagottos might be a little bit more higher energy than the Labradors. My granddaughter has low energy so she needs that motivation. When it came time to get our dog, and when we were ready, and we were a little bit behind because of Covid, so it was about 2 years and 4 months, we got invited to go to the university where they run the program at Latrobe. We got the chance to meet Zara there. We were told they had one dog there that could be suitable and there were 4 or 5 other dogs we could meet the week after. So we went along and the head dog trainer was there and he is the one that matches up the person and the dog as there has to be a connection. At the end of that he said Zara would be a good fit. He said you can go away and think about it and you can meet other dogs next week if you want. We went away to think about it and my granddaughter said I want Zara. We did have a choice. And there were Labradors as well.
19:42 What age would you recommend doing this?
My child was just over 9, when she got diagnosed with the FASD. Because that could cause such hard times for her future and because it was such a hidden disability. I can’t really answer that question but for us she was just over 9 and it was a 2 year program and she was just turning 12 when we got Zara. So she was just under 10 when we started the program and that was a good age because she was capable of doing things physically and with prompts. Me personally I wouldn’t do it with too young a child. The child can’t be pulling the dogs tail or doing rough play with the dog. There are certain rules around having an assistance dog. They are trained not to bite, not to do tug of war, not to chew your furniture. And if you have younger siblings you have to incorporate that as well. Is that going to work?
21:51 What about the ongoing commitment and training for your granddaughter?
The dog is her dog and I am the secondary handler of the dog, but I’m her carer so it’s still my responsibility to remind her but she has to physically do everything for the dog. Basically she has to get up in the morning and take the dog to the toilet and the dog doesn’t go to the toilet on property. The dog has to be off property to go to the toilet. The reason behind that is because you are going to take them into the shopping centre or on public transport so you have to teach them to go to the toilet on command. You say a basic word and they have to go to the toilet. She has to take them out to the toilet in the morning on the nature strip. She has to then feed the dog and measure out how much to eat. We don’t want the dog to end up overweight, because they will eat all day. We have to make sure the dogs water is filled up so I have to check the water and tell her have you checked the dogs water today it looks a bit low. We then have to go out on our pooh walk because the dog is in a routine just as much as the child. She has to walk the dog and I walk behind as I am just the carer behind overseeing. She has to stop, she has to know when we get to the grass the dog goes on a long lead so it has the opportunity to go to the toilet. She has to say the words. She has to pick up the pooh and that was a huge one. It’s a sensory thing and its disgusting. Its part of the two year training. I never thought we would ever get to that but she does it. When we get home its about whats happening today. Are we gong to the therapist. Is the therapist coming to the house? Are we taking the dog or not. She knows how to put the dog walking stuff on the dog, which is the dog harness and she does all ll of that. If we are going out what do we need to take. We need to take water, a bowl, is the weather hot, is the weather cold. There is a lot of responsibility on the child but really if you just incorporate that in your routine. But as a carer there is a lot of responsibility because you cant just assume someone with a brain based disability has done what they need to do.
At the same time it takes the focus off themselves and she is focussing on the dog and she is not thinking about her depressive mood as the dog needs these things done regardless of how she feels. It helps her to realise its not just about Im depressed, unmotivated and not moving today.
26:25 How has your granddaughter benefitted from the program? Independence, friendship, motivation, caring for others.
It has improved her mental health and wellbeing astronomically. It has reduced her anxiety as she can now go to the shopping centre, somewhere that she didn’t want to go before. In fact before she didn’t even want to go in the car and now she sits in the back in the car. With a lot of disabilities, they are often thinking the worst. It’s raining, so there’s a storm or this and that. It gives you a best friend. Socially its hard to have friends because your peers think why is she not interacting socially the way we should. It gives her a best friend. It gives her something that she loves and cares about but she gets that love back from the dog. As long as the dog is fed and walked. Animals are full of love so they will love you no matter what. Its given her a sense of purpose. It shifts the focus off herself and she feels needed. Sometimes children with disabilities especially at my granddaughters age heading into being a teenager. They don’t feel like they fit or have a purpose and they don’t feel they can do things and they want to be like everybody else but they find it ten times harder. So she feels like she has a purpose and is needed and she knows things about assistance dogs that other people don’t know.
29:02 What were some of the challenges along the way that you weren’t aware of previously that you think every family needs to consider?
Besides the commitment from the carer, the hardest challenge I found was when Zara came to live with us. Its ok to have weekly training for an hour and then we had a few weekly one on one sessions with Zara before she came for a bit of bonding. Once the dog comes to live fulltime it’s a very full on process and probably the hardest part because there are a lot of rules and it’s a very strict program that you need to stick to. We were having 4 hour training sessions in the home for the first week so you had sometimes two or three. We had the OT here we ha the dog trainer here. We had to forget doing anything else. It was a very intense part of the program because you have to remember that the dog has been with a foster family so it’s come into a strange house so we have to make sure the dog is supported but then we also need to bond the child with the dog and they need to find their way together. So that’s why it’s such an intense part of the program. There’s rules. You cant be leaving chocolate around. One of my granddaughters things was having chocolate hidden in every part of her room. We had to do some retraining around that. I started that training before. The dog isn’t allowed to eat off the floor. It’s not allowed to eat scraps. We need to be sitting at the table and we have to clean up after ourselves because a natural thing is for a dog to eat scraps. That’s hard if you go to a restaurant. I did get to a point after 3 weeks that I thought oh what have I got myself into here. It was full on for me because I had to make sure all these rules had to be followed. There were so many rules that needed to happen. And we still needed to go for a walk come rain, hail or shine. Dogs4Life set a route A around the block that we had to do 5 times a day. Over the weeks we had other routes to walk.. It was to make the dog familiar so it knows how to come home. With her brain she becomes disorientated and while I might have walked that walk a hundred times she might think I don’t know which way to walk but the dog knows which way to walk.
The other thing I would like to say in that is that if carers are thinking about getting an assistance dog for their child, just be aware that an assistance dog doesn’t replace a carer. You cant just think you can send your child out the door for a walk around the block with the dog and everything is hunky dory. That is hopefully the point we will get to. That is definitely the aim to make her more independent.
Also requires a whole family commitment as there are other things you need to think of. If you are going down the beach like we did in January for a few weeks, you have a dog. You can’t just go to the beach for the whole day in the sun with the dog. That’s just one example. It’s a whole family commitment and it’s like having another family member. The dog is there for the person one on one. The dog is not there for me. Its not there for my granddaughters sister. So you have to be mindful of that.
34:54 Is Zara an assistance or therapy dog? How does the training differ?
Zara is an assistance dog but under that comes an emotional therapy companion dog. The training is different. With an assistance do if you have a child that has some form of disability where they require a dog to alert, maybe they have a diabetic child, the dog can be trained to alert if their levels get too low or you might need an assistance dog to push the button at the lights. They are trained to suit the disability. A therapy companion dog is basically trained and used for not just one person. For instance my granddaughters psychologist has two therapy dogs in her room which she uses for emotional support for the child when they are in the room talking. So they are trained to be with more than one person. An assistance dog is trained to support just their one person. In saying that they might have therapy dogs that they use in retirement villages or children’s hospitals or schools to support wellbeing and mental health. Someone individually might have a dog that they call their emotional support dog. An emotional support dog isn’t covered by legislative laws. Whereas an assistance dog has to sit a PAT test every year (Public Access Test). They have to do that PAT with their person each year so that they can go anywhere. The only place an assistance dog can’t go is the operating theatre. So if you want to get on a plane, say we decided we are going away and my granddaughter is taking the dog, then that dog can sit on a seat next to my granddaughter and I don’t think I have to pay for that seat. I haven’t tried it. I haven’t put that to the test. There are other things such as if I want to go and stay in a motel, I don’t have to pick a dog friendly motel. They prefer you don’t pick a dog friendly motel. I don’t go to dog parks. I don’t go to dog only beaches. I go to beaches where dogs aren’t allowed because she is allowed because she is an assistance dog. They are covered under a law so if you get knocked back you are supposed to call the police because you cant refuse assistance dogs entry. I have seen people walking around with therapy dogs with dog therapy jackets on around shopping centres. I haven’t seen them pulled up. I wouldn’t personally say anything but legally they are not actually covered.
39:58 Did you make that decision about getting an assistance dog or did Dogs4Life?
My granddaughter actually helped me make that decision. She was the one that first mentioned it. She said I want a best friend and someone that understand me and loves me no matter how I am. She was always an animal lover. Animals were always something she connected with. When she was younger she used to bring all the snails home from school. She felt they would have a better home in our house.
Whatever program you go on if they don’t think they can offer you what your asking for, they will tell you straight out. But it might be what your home is like. If you have 8 kids and you want an assistance dog for one child, that might be a little bit awkward. Its going to be a lot of work. Where you live does not change whether you can get an assistance dog. People that live in flats or high rise apartments can have an assistance dog. The dog doesn’t go to the toilet on property anyway. The dog doesn’t bark because its trained not to bark. You can’t even get refused a rental property if you have an assistance dog.
41:55 How did NDIS support you in this venture?
Great subject. Sometimes their your best friend and sometimes their not. When my granddaughter first got accepted on NDIS it was just after the FASD diagnosis, even though we probably could have gone on it sooner. I was really lucky that I had a good person as I didn’t know much about it. She put in a long term goal for my granddaughter to have her own assistance dog. So that’s the first step to have that put in as one of your goals. Once it is there it is hard to get out. That was a direct connection to supporting therapy for her even though we have other therapists.
NDIS paid for her to have those two years of weekly dog training. You have to be really careful here because I don’t want someone else to just think it will just go on NDIS. Every individual is different. They are trying to cut back on assistance dogs over the last couple of years because there are children with ASD that are trying to get assistance dogs.
Then after 2 years and we knew that wasn’t long before the time was coming for us to get our own dog. Dogs4Life have they own OT and psychologist so they do the NDIS paperwork that’s required to put in for the funding. So we did that process and it was denied. All criteria were met except it’s a child vs an animal. Animals can be unpredictable. There is a fine line there. It can be argued. You can go through an appeal process that can take up to two years. I wasn’t prepared to wait. We had already waited two years and it would have been another two years.
That’s when I looked at other avenues. You can look at fundraising, you can look at a GoFundMe page and you can get someone in the business community to support you for fundraising. I was having a conversation with the manager of PCA Familie at that time and she said we can help with that. I put through all the information we had from NDIS and Dogs4 Life. I also put through my own statement. The person at PCA Families could only approve a certain amount of money. So the person from PCA Families also wrote a statement of support and that when over to a board meeting at OzChild and they approved the funding. That was how we ended up getting the funding for Zara. OzChild sent the payment through to Dogs4Life. It was a miracle really.
There are other funding options that I have become aware of such as Variety who will support funding assistance dogs. They do intake once a year and the criteria has to be that you are denied funding somewhere else first.
47:16 Is there anything else you wish to comment on today?
Everyone’s journey is different. I can only tell you my journey. My thought process in getting an assistance dog was look into the future. For instance, my child is 12.5 and about to become a teenager. Going by my FASD report the future was sounding quite bleak. I think I was looking at a therapy that would best help my child. But an assistance dog does not replace a therapist. The assistance dog is part of our therapy team. We still do speech, OT, art therapy and the dog is part of that team.
Thankyou
To anyone making the time to listen to this recording, thankyou for giving up your valuable time for the benefit of the young people in your life. Until next time have an amazing week.
