Dr. Kathleen Tait (USQ) & Professor Rafat Hussain (UNE)

1. Issues & challenges supporting rural families raising children with disabilities in remote regions of NSW. Dr. Kathleen Tait (USQ) & Professor Rafat Hussain (UNE)

2. Introduction • Caring for a child with a significant impact intellectual or developmental disability can be extremely exhausting for all family members. • The concept of respite care ( or short breaks ) was designed in part, to give the family a break. • However, when a family caring for a child with a disability lives in a rural and remote area, access to such services can be in short supply.

3. Background • If stress reduction, is touted as a major benefit of respite care, then it is important to examine whether or not this is a likely outcome for rural families with children with disabilities seeking respite services. • Does respite care reduce parental stress, improve parental emotional well-being, and increase the quality of family life? • Or…is the strain of accessing acceptable respite services causing more burden to rural & remote families?

4. Purpose of the study • Seeking answers to these questions directly from the consumers, may enable support service professionals to design better respite care services for children with disabilities living in a rural/remote location in NSW, Australia.

5. Publications • Tait, K. & Hussain, R. (2014 – submitted). Do short breaks (respite care) make a difference to the emotional well-being and quality of family life for families raising children with intellectual disabilities in rural and remote Australia? An analysis of parent responses. Journal of Policy and Practice in Intellectual Disabilities. • Tait, K. & Hussain, R. (2014 –submitted). You gotta have a service, before you can have a gap! Using quality of family life issues to explore parents’ experience of educational service provision for children with developmental disabilities in rural Australia. International Journal of Disability, Development and Education (IJDDE)

6. The context • The New England region of northern NSW consists of large areas of rugged country, as well as an extensive plateau. • The region’s population is dispersed among large regional towns of 20–40,000 residents, smaller towns of 1–3,000 residents, and isolated rural communities of less than 1,000 people (Wilkinson, 2014). • In addition, some people live on remote properties (farms) many kilometres from their nearest neighbours, and hundreds of kilometres from towns. • One participant explained: When we lived in Collarenebri, it was a 300 kilometre round trip to the supermarket(Interviewee No 2).

8. Project design • Participant sample:Families registered with regional disability providers, including the regional office of the NSW state disability services. • Phase 1: Demographic info & survey (FQoL) – postal invite • Phase 2: Optional interview • Family Quality of Life Scale • assesses parents’ perceived satisfaction with their FQoL . • Domains: family interaction, parenting, emotional wellbeing, physical/material wellbeing and disability related services).

9. Respondent profile • Predominantly female: 96% • mothers [84%], fathers [4%]; grandparents [8%] and foster parents [4%] • Mean age of mothers: 46yrs[23-62 years] • Family structure: 2 parents cohabiting [84%] • Combined family income: < $25k [33.3%]; 25-50k [19.6%]; 50-100k; [35.3%]; > 100k [11.8%] • No. of family members living at home: 2 [9.8%]; 3 [23.5%]; 4 [21.6%]; 5 [31.4%]; > 6 [13.7%]

10. Children’s profile • ASD (n= 14, 28%) [Autism (n=7) & Asperger’s Syndrome (n=7)] • Down Syndrome (DS) (n=6, 11.7%) • Global Developmental Delay (n=6, 11.7%). • A range of other individual diagnoses (n=25, 49%) • males (62.7%); females (37.3%). • Mean age: 9.5yrs [3-18 years] • 9.8% (n= 5) were of average intelligence, • 35.2% of children (n=18) below average intelligence • The majority of parents (n=28, 54.9%) indicated that they just did not know.

11. Results - FQoL • The participants (N=51) were asked to rate their satisfaction with their family’s quality of life using the FQoL survey (2005). • The results revealed that these families rated their satisfaction as being between 55% – 65 % at or above the mean (50.00) for 4 out of 5 of the FQoL variables (Tait & Hussain, 2014). • This indicates that participants’ were moderately satisfiedwith their level of: family interaction, parenting, physical and material well-being and disability related support items.

12. However! • For the emotional well-being (EWB) variable, only 24 out of 49 families (49%) scored at or above the mean (50.00). • The issues that dominated this domain related to the allocation and delivery of resources and support.

13. Q3. My family has the support we need to relieve stress. • To get any respite? I’ve gotta go all the way into town, into Armidale, to do that sort of thing. That’s an hour away, and everybody thinks like, “Oh its only an hour from town”, but it’s up and down hills and around, and up, and I’ve hit ‘roos before. It’s too hard for me to go in there (Interviewee No 12). • One of my biggest issues at the moment is accessing respite that I think is appropriate. First of all getting workers in this area, like getting someone to come to my home and do respite in-home, which is my preferred form of respite, is very difficult. There is not a lot of people that want to travel out of town (Interviewee No 5).

14. You gotta have a service, before you can have a gap! • Respite doesn’t happen, because they don’t want to give me the dates….or there’s no workers. Well, why tell me I can get 21 x days a year for him, and then not be able to give me the dates I want?(Interviewee No 1). • You have sort of got to rev yourself up to “Oh God! not this again”. I rang the Commonwealth Care Respite Centre. I said, “We are going to the Gold Coast for an (autism) conference and can we have the person (to care for child), that we had last time, because she was fabulous”. I was told “Oh well, I don’t know? No, No.”. I said, “You guys employed her 18 x months ago to do exactly this. What do you mean no, no, no?”. She is like “Oh well things have changed now”. She said, “Send me an email to Hunter New England Health”. I thought “Far out!” How are you now Hunter New England Health, when you were a Commonwealth Carer Respite Centre? (Interviewee No 15).

15. Worries about quality of care received • My (18 yr old ) would take games with her, having been told by a case worker “Oh, they'd love to have you, because you can play games and things'. Well actually, they'd sit her in front of the television and go out and sit on the verandah and have a smoke and a cup of tea with the other worker. So (18 yr old) would behave terribly, to get their attention, because she'd been told that they'd play games with her. She took her UNO with her every time, but no-one ever played a game with her.No-one! I don't want somebody sitting out on the verandah having a smoke, when my daughter's inside wanting someone to give her some company. That's not respite for me! (Interviewee No 6).

16. A break will be good for you. • People just assume it is fine and that a break will be really good for you. My son is going away to live with strangers for a week….. and I am not good with it! He is my eleven year old. And to live in this place that has got no carpet on the floor, almost like a very sterile environment, andtonot really be doing anything very interesting… (Interviewee No 7).

17. Q13. My family has outside help available to us to take care of special needs of all family members. • From the beginning, you know, if (child) needed to go to the toilet or something and needed some help, they'd (vacation care teachers) come and get (sibling) to take her. Or, if (child) was getting upset, they'd get (sibling) to come and settle her down. It's like –“She's in year 4, you know, it's not her job. It's your job – please don't do this!”. But that kept happening (Interviewee No 8).

18. So - why aren’t families using (respite) service support ? • While most parents reported receiving funding for some version of respire care (i.e., residential care, in-home care, vacation care, etc.), in almost one third of these cases (n=18), the offer had not been taken up, because families did not find the service on offer helpful.

19. Service information confusion Participants spoke of the many …… • rule changes to funding allocations, • changes to names of agencies, and • being confused by what funding body they were eligible to access, etc. • In addition, some parents explained that there were barriers to being able to use what funding was available, in the way that they wanted, in order to meet their families’ needs.

20. Services do not match family need • Like they made this rule that you can’t use it (respite care) on Sundays. Well, I only want two hours on Sundays, ‘cause the pay rate (for my work) is more. You know, I want 2 x hours on Sunday, rather than 4 x hours on Monday. That is more important to me. So they make little rules like that. They’d sort of say, ‘Yes, it’s for you to use. This is your service. We want to help you’…but a lot of services are not matching our needs particularly well (Interviewee No 9).

21. Services do not meet children’s needs. • They (respite care workers) don't manage her well, so she has these terrible eruptions…and that sets a pattern and then she knows that's how she can get out of the situation, 'cause they ring us to pick her up (Interviewee No 10). • I just feel sick at the thought. Respite needs to be respite, you need to feel comfortable about them being there and if he is happy and safe. I don’t feel like he is treated as an individual there and I know he is distressed. He came home one time and he was just hitting himself the next day, all day. And that was when we realized that we just weren’t going to use it again (Interviewee No 3).

22. Inappropriate application forms • I’ve done an ACAT Assessment for my 84-year old father and a Post-School Assessment for my 18-year old son (with severe autism) and they were both almost, the same questions. … to the point where… I filled in the questionnaire for my son and one of the questions was “Does the ‘Client’ - note! no longer a student, even though it’s the Department of Education doing it. Does the ‘Client’ have any dangerous behaviors? For example; Smoking in bed”. Now, not many children with autism smoke in bed when they live at home! • So (adult child) was being assessed for his level of need for skills based on an education system that would fit him for the future….whereas my father was being assessed for the support that he would require medically and otherwise in a nursing home situation. How do you equate those two things? (Interviewee No 11).

23. Parent burden increase • Parents described how even though technicallythere was funding available to families for respite services, there were constant problems with: • long and complicated application processes; (resulting in parents either not being able to access this money); 2. long waiting periods to get funds reimbursed; 3. the amount of funding allocated to them was not adequatefor their child’s or their family’s needs; 4. Limited number of care workers available (on requested dates); 5. services being geographically distant; 6. Parents were also worried about the quality of care & suitability of activities on offer in respite care centres for chn.

24. One size does not fit all • This cohort of parents believe that currently, there is a ‘one size fits all’ approach to respite care service and that as a result, respire service provision in rural and remote regions of NSW is not adequately meeting their child’s needs. • There is this ‘generic’….”This is what happens for all people with disabilities'. “ Instead of… “all the disabilities are so different”. Respite care has to be specific to their needs, not just ‘generic disability’ services! (Interviewee No. 8).

25. Conclusion Respite care was designed to enhance the QoL of those families who are raising children w/disabilities – not increase their burden. Changes that would help more families access respite service provision in rural and remote areas are : • Being less service-centered, in the approach to offering respite care to families of children with disabilities. • Increasingdistribution/access to information/updates about services & agencies & rules of funding access. • Simplifying the current forms (complicated & time consuming) and make sure that the questions on the forms are child oriented. • Seek parent feedback/evaluation of respite service: Address the reasons why parents have concerns about the quality of care that their children receive at respite, and • Seek parent ideas or request professional development on a range of child-friendly activities for children in respite.

26. How to contact me? • Dr. Kathleen Tait • kathleen.tait@usq.edu.au • NB: I am based in Sydney.

27. Thank you!

28. Acknowledgements • Project:Vulnerability and Rurality: Parental perceptions of quality of life for families and children with disabilities. • The project was funded by an AFRID project grant and logistical support was provided by NSW ADHC regional office and local disability organizations. • The authors acknowledge the contribution made by the Collaborative Research Network on Mental Health and Well-being in Rural Communities, supported by the Department of Industry, Innovation, Science, Research and Tertiary Education, Commonwealth Government of Australia.