Commonwealth Senate Standing Committee on Community Affairs

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1 Committee Secretary Senate Standing Committees on Community Affairs PO Box 6100 Parliament House Canberra ACT 2600 Phone: Fax: st February 2014 Commonwealth Senate Standing Committee on Community Affairs Inquiry into Prevalence of different types of speech language and communication disorders and speech pathology services in Australia Thank you for providing Northcott with the opportunity to provide a submission as part of the inquiry into Prevalence of different types of speech language and communication disorders and speech pathology services in Australia. About Northcott Northcott was established as The NSW Society for Crippled Children in 1929 by the Rotary Club of Sydney. Northcott's purpose is to build an inclusive society where people can live the life they choose. This is achieved by assisting people with disabilities to develop their skills and achieve their goals - including their potential for independence and ability to participate in their community. Northcott supports over 13,000 people with disabilities and their families across NSW and the ACT. Northcott employs over 600 staff state-wide, providing more than 100 services from 25 sites and offices across NSW and the ACT. Northcott provides services to people with a broad range of disabilities including physical, intellectual, sensory, acquired and degenerative disabilities. Northcott has been providing support to people with a disability for over 80 years. Our services broadly fit into six streams: Accommodation, Individual and family support, Employment and life skills, Recreation and respite, Therapy, Equipment and technology. Northcott has particular experience in providing speech pathology services for children, young people and adults with disabilities. We are a registered provider of speech pathology under the Commonwealth Helping Children With Autism and Better Start programs; we receive funding from NSW Aging Disability & Home Care, NSW Health, Medicare Locals and International Health & Medical Services (IHMS), to provide a range of speech pathology services to support the speech, language, communication and swallowing needs of children and adults with disability.

2 Northcott s Submission Northcott s submission is based on our extensive history in providing services to people with a disability across NSW and the ACT, and responds to the following terms of reference: Terms of Reference Page a. the prevalence of different types of speech, language and communication disorders and swallowing difficulties in Australia; 2 b. the incidence of these disorders by demographic group (paediatric, Aboriginal and Torres Strait Islander people, people with disabilities 3 and people from culturally and linguistically diverse communities); c. the availability and adequacy of speech pathology services provided by the Commonwealth, state and local governments across health, 4 aged care, education, disability and correctional services; d. the provision and adequacy of private speech pathology services in Australia; 7 e. evidence of the social and economic cost of failing to treat communication and swallowing disorders; 7 f. the projected demand for speech pathology services in Australia 8 a. the prevalence of different types of speech, language and communication disorders and swallowing difficulties in Australia; Northcott understands the prevalence of different types of speech, language and communication disorders and swallowing difficulties to be very common in Australia. Previous statistics from Speech Pathology Australia (SPA) website indicate that: 1 in 10 children experience a communication difficulty 1 in 4 preschool age children have a speech or language difficulty Only about half of these children receive treatment While 2013 statistics show that: 20% of four year old children have difficulty understanding or using language Children with a language impairment are six times more likely to have a reading problem than children without 1. Our experience providing services for people with a disability indicate that the prevalence among our client group is as follows: For children with disabilities there is a high incidence of difficulties with early communication skills, speech sound development, receptive language, expressive language, early feeding and social skills, and developing use of AAC (Alternative and Augmentative Communication). 1 Speech Pathology Australia: ment_in_australia.pdf 2

3 For children specifically with Autism Spectrum Disorder there is a high incidence of difficulties with early communication skills, including: engagement and interaction, social skills, receptive and expressive language skills, and higher level language skills. For adults with disabilities (primarily physical disabilities) there is a high incidence of severe dysarthria and therefore reliance upon AAC to communicate. For this group, there is also a high incidence of dysphagia with a decline in skills overtime. b. the incidence of these disorders by demographic group (paediatric, Aboriginal and Torres Strait Islander people, people with disabilities and people from culturally and linguistically diverse communities); Northcott s experience is that there is a higher incidence of speech and language difficulty amongst children with disabilities, compared with the general population. We have also found that there is a higher incidence of speech, language and literacy difficulties in areas of lower socio-economic status and culturally and linguistically diverse (CALD) communities. This comes from our speech therapy work with children in with schools in areas of lower socio-economic status and high populations of students from CALD backgrounds. From this work in schools, we believe the incidence seems to far exceed the 20% prevalence for pre-school age children 2, with the majority of children in each class reported to be having difficulties. Northcott s SPOT in Schools Project has experienced this first-hand. Northcott s SPOT (Speech Pathology and Occupational Therapy) in Schools project is a collaboration between Northcott, NSW Department of Education & Communities, and Wentwest Medical Local, which targets capacity building of teachers in mainstream schools with high needs. Speech Pathologists and Occupational Therapists provide training and team teaching to teachers to increase their ability to identify and adapt their programs to assist children with speech pathology and occupational therapy needs in the classroom. For one school Northcott works in as part of our SPOT in Schools Project, the Speech Pathologist assessed most of the kindergarten children, and found that 60% had a severe language delay. In addition some of the remaining 40% of the children had a mild or moderate language delay. Like our experience with children with disabilities, there is greater incidence of speech disorders with adults with disabilities than compared to the general population. Of particular note is that for this demographic group, they are at high risk of complications secondary to dysphagia. For example, the 2010/2011 NSW Ombudsman Report of Reviewable Deaths: Deaths of People with Disabilities in Care 3, found that: Choking was the leading cause of non-natural death; and 2 Speech Pathology Australia: ment_in_australia.pdf 3 NSW Ombudsman, Report of Reviewable Deaths in 2010 and 2011 Volume 2: Deaths of people with disabilities in care: -and-publications/publications/annualreports/reviewable-deaths-vol-1/report-of-reviewable-deaths-in-2010-and-2011-volume-2-deat hs-ofpeople-with-disabilities-in-care 3

4 Aspiration Pneumonia was one of the leading causes of death. This information and our experience tell us that adults with disabilities not only have a higher incidence of speech disorders than the general population, but that these disorders and difficulties have significant impacts upon their health and wellbeing. c. the availability and adequacy of speech pathology services provided by the Commonwealth, state and local governments across health, aged care, education, disability and correctional services; Northcott operates a range of speech pathology, and related allied health therapy services, which are both commonwealth and state funded. We also support clients across NSW and the ACT who may be engaged with, and/or require support from, speech pathology services provided by the Commonwealth, state and local governments across health, aged care, education, and disability services. From these experiences, Northcott s assessment of the availability and adequacy of speech pathology services across the different government provided services is as follows: Health Community Health: Have very long waiting lists of usually 1-2 years. Only accept referrals up to 8 years of age, but if the child turns 8 before they are seen they will not be offered a service. Children are only provided a service for a limited time. Many children slip through the cracks if they have moved address by the time they are at the top of the waiting list particularly common in areas of lower socio-economic status and culturally and linguistically diverse populations. Many families are not aware that Community Health services are available to them in their community. Overall, Northcott would stipulate that there are many speech pathology needs unmet and services through Community Health are inadequate to meet the demands of the community. In addition, for children above 8 years of age, there is no funding available to access speech pathology through the health system. Hospital services: Focused on complex swallowing and medical complex cases. Northcott s experience is that there is some unmet need for speech pathology services in the hospital system, but this is significantly lower than the demand for speech pathology in the community health services. Education There is currently no government funding for speech pathology services in schools, and no government funding for school aged children without disabilities who have communication and swallowing needs. Northcott s experience is that there is extreme unmet demand for one-to-one, individual speech pathology services for school children. 4

5 The lack of availability to speech pathology services in the education system has a significant impact on education outcomes, and social and emotional wellbeing, of children who have speech disorders or difficulties. Overall, Northcott would stipulate that there is a very high level of unmet speech pathology needs for school children, and services through the Education system are inadequate to meet the demands of students. Disability Services (paediatric) The NSW government provider of disability services, Ageing Disability & Home Care (ADHC), has considerably long waitlists for children to receive speech pathology services (up to 3 years). ADHC model of practice focuses on providing support and clinical interventions to address one or two time-limited goals; however, these children have complex and ongoing needs, and may require access to ongoing speech pathology supports. For ADHC funded speech pathology in the disability sector, children have to fit particular criteria to access the many different services across the state. These criteria can be inconsistent, variable and inequitable, and there does not appear to be a comprehensive approach to identifying, funding and allocating speech pathology services in-line with areas of need or unmet demand. Eligible children with specific disability types do have access to Better Start and Helping Children with Autism (Commonwealth) funding; however, when the child turns 7 (or earlier if they have exhausted their funding allocation), families are often left not knowing how to obtain ongoing services for their child, or if these services are even available. Disability Services (adult) Northcott is one of the very few disability providers who receive government funding to provide speech pathology services for adults with a disability. The availability of services, and adequacy of funding, from the disability system which is allocated to adults is extremely limited and more often than not, nonexistent. Northcott is not aware of any known sources of government funding for adults to obtain access to communication and literacy skills development. This includes access to funding to support in investigating AAC technology options to assist with their communication needs. However, with the advent of the NDIS trial sites, and the anticipated roll-out of the NDIS across the country over the coming years, adults with communication, literacy skills development and ACC communication requirements, should have access to funding to adequately address these needs. Overall, Northcott s experience is that the adequacy and availability of speech pathology services provided across the all levels of government, and the government funded services in the community sector, is insufficient to meet demand. Moreover, we believe the current services are inadequate in so far as the services are often fragmented and difficult to access and navigate, availability is ad-hoc and variable, criteria for access is limited and inconsistent, and services have a stop/start nature, are time-limited and highly rationed. The issue Northcott sees here is that availability 5

6 of individual speech pathology services are actually based on a set funding amount, rather than on an assessment of individual need (for example: Helping Children with Autism provides all children with Autism under 7 years of age access to $12,000 funding for allied health therapy services, regardless of their level of need). Northcott advocates for access to individual funding for speech pathology services which is based on an assessment of need, and that arbitrary criteria based on age or disability diagnosis is not useful in assessing an individual s need for speech pathology clinical support and intervention. This is why Northcott strongly supports the roll-out of the NDIS, as we see this as a means to speech pathology services being available to all people based on their actual need. Northcott also experiences similar difficulties with the funding shaping the adequacy and availability of services in our government funded programs to provide speech pathology services. Our experience is that often government will fund a program to run for a contracted period of time, and that once this time-limited contract period is over, the service ceases. Our issue here is that no consideration is given to the positive outcomes and results the therapy program may be achieving for individuals or the community, and that the investments already made in the program which have already built sustainability and capacity of parents and the community, are not considered in terms of reducing the costs in the long-term. For example, Northcott received ADHC funding to run an action research project on school readiness for Aboriginal children in Moree. As part of the service offering through this project, Northcott provided a supported playgroup, during which Speech Pathologists (and Occupational Therapists) visited, assessed children, and supported parents (and their community) to understand their child s communication and language needs in order to better equip them to start school. Despite the positive research results in terms of school readiness, and the parents attending the playgroup requesting that it continue, the government funding body is unwilling to provide funding beyond the initial contract period to enable the playgroup to continue. Northcott believes that government investment into speech pathology services not only needs to provide individual funding based on an appropriate assessment of need, but that funding should be made available for capacity building speech pathology programs which aim to increase the skills of individuals and communities, and thereby reduce the future cost of specialists speech pathology services in the long-term. Northcott s SPOT in Schools project is an example of this. SPOT in Schools aims to build the capacity of teachers to support students with speech pathology (and occupational therapy) in the classroom. Rather than providing one-toone individual speech pathology support to the child, the project focusses on working with the teachers, and across the whole class, provides training and team teaching to teachers to increase their ability to identify and adapt their programs to assist children with speech pathology (and occupational therapy) needs in the classroom. Long-term investment from government in these types of services are likely to increase the skills of both teachers and children, and thus reduce costs in the long run. Northcott strongly believes in this capacity building approach. We understand the benefits this approach has in resourcing community members in such a way as to foster inclusive practice and settings, build sustainability, and reduce the ongoing need for more specialist supports. However, also acknowledge that some children 6

7 still require targeted, individual speech pathology services to address their specific communication needs. d. the provision and adequacy of private speech pathology services in Australia; Northcott believes there is a sound level of availability of private speech pathology services in metropolitan areas; however, there are often still waiting lists for services that offer support under Helping Children with Autism or Better Start funding. Our experience is that there is much more limited availability of private services in regional and remote areas, and in some rural communities, there may no register providers for Helping Children with Autism or Better Start funding. This means families often have to travel to the nearest large regional or metropolitan centre to receive service. Northcott is unable to comment specifically on the adequacy of these private services; however, our experience is that at times, the private sector does not always have the skills and expertise to support people with disabilities who have complex speech, communication, or swallowing needs. This expertise mostly sits in the disability sector specifically. Therefore, families who access support through private services for their child with a disability may not always understand the nature of skills and level of expertise required to support their child, nor receive the specific clinical supports their child needs in the context of their disability. Northcott believes that speech pathologists providing clinical support and interventions to people with disabilities need access to specific education and training to enable them to provide adequate and clinically appropriate support. e. evidence of the social and economic cost of failing to treat communication and swallowing disorders; and Northcott is an advocate of prevention and early invention in the treatment of communication and swallowing disorders. We believe intervening early, with the right level and nature of supports for a person is not only better for the individual s longer term social outcomes and quality of life, it also works to reduce the future cost of supporting the individual. Our experience is that early intervention (particularly working with adults) can increase the likelihood of future employment, and that ongoing access to speech pathology services to stop deterioration and decline in functioning, can assist someone to stay in the workforce. This has significant cost savings for the entire community. Moreover, we know from our experience in service provision, that failing to treat communication and swallowing disorders early, or even at all, results in social and economic costs for both the individual and the community. For example, failing to treat a communication disorder for a person with a disability and provide them with adequate funding to purchase appropriate AAC, compromises their ability to communicate independently. This not only costs in terms of higher funding required to provide daily personal support (i.e. funding for a support worker to accompany the individual to facilitate communication); it also costs in terms of the social and 7

8 personal development of the individual, and their ability to contribute as an independent and active citizen in their community. The impact of failing to treat communication and swallowing disorders adequately through the disability system also results in costs shifting to, and increasing in, other systems such as health and education. For example, children who have not received speech pathology treatment prior to school entry will struggle with learning, particularly literacy. This then requires teachers to provide additional classroom support, and schools and the education system to provide access to specialist supports and programs. Similarly, adults with disabilities who are unaware of the risks of aspiration, or who are unable to access funding to have their swallowing assessed and reviewed, may experience in significant decline in health (and thereby increased economic cost to the health system), or even death. f. the projected demand for speech pathology services in Australia. Northcott s experience is that there is currently a high demand for speech pathology services, and there is no indication that this will decrease in the future. In addition, there is an ongoing high unmet need for speech pathology services in regional and rural areas, and the adequacy and availability of these services is insufficient. Moreover, with the introduction of the NDIS, more people will have access to funding to support their speech, communication and swallowing needs. The expansion of the NDIS to cohorts of people who have previously missed out on speech pathology services (e.g. adults), and the sheer increase in funding in the sector under the NDIS, is likely to significantly increase the demand for speech pathology services in Australia. The increase in demand for speech pathology services under the NDIS also highlights a major workforce issue within the disability sector, where the current challenges in the supply of speech pathologists available will only be compounded. Significant workforce development investment, flexibility in contractual and industrial arrangements, and exploration of new models of practice and service provision, must be considered for the sustainability of speech pathology (and arguably all allied health professional) services under the NDIS. 8

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