Respite for People with a Disability

Transcription

1 Respite for People with a Disability Eastern Metropolitan Region (EMR) Report prepared by Respite Information and Development in the East (2010)

2 Introduction This report provides an overview of respite in the EMR. The purpose of the report is to guide the EMR respite sector with the future development of respite services for people with a disability. People with a disability, for the purpose of this report, are aged 6 to 64 of age with ongoing limitations as determined by the Disability Act The respite needs of people with a mental illness, children aged 0 to 5 and people aged 65 and over are beyond the scope of this report. Respite allows families caring for a person with a disability the opportunity to take a break from their caring role. Even though most families take great joy in supporting their loved ones, the physical, emotional and financial impact can be overwhelming. It is therefore important that the parents/carers of people with a disability are given the opportunity to take a break. Respite can also be a rewarding experience for people with a disability. It provides an opportunity to meet new people, pursue an interest and have new experiences independent of their family. The report provides a summary of information gathered from a series of consultation sessions with parent/scarers of people with a disability and respite service providers in the EMR. There are suggestions for the further development of the sector, some of which RIDE will address. Other suggestions are for the EMR respite sector to consider. People with a disability in the EMR The Eastern Metropolitan Region (EMR) of Melbourne consists of the council areas of Boroondara, Manningham, Whitehorse, Monash, Knox, Maroondah and Shire of Yarra Ranges. The table below lists the population of people living in each council area and the number of people aged 6 to 64, who indicated on the 2006 Australian Bureau of Statistics (ABS) Census that they need assistance. LGA Number 5-64 Total population Percentage of population SYR 2, , % Maroondah 1, , % Knox 2, , % Whitehorse 2, , % Monash 2, , % Manningham 1, , % Boroondara 1, ,486 1% These statistics have been derived from the Census questions, do you require assistance with self care, body movements or communication. The accuracy of these statistics can be questioned as an answer to Do you require assistance is subjective. People who have responded yes might not meet requirements of the target group for the Disability Act While some people who do meet target group for the Disability Act 2006 might not have indicated they require assistance, for instance a parent of a child with a disability might not indicate their child needs assistance as every child requires a certain level of assistance. Nevertheless, these statistics indicate that approximately one in every 100 people aged 6 to 64 in the EMR require a certain level of assistance. 2

3 Respite options currently available in the Eastern Region: Alternative family care: Alternative family care programs recruit volunteers that are matched to a child with a disability and their family. The volunteers are trained and mandatory checks completed. The volunteer cares for the child on a regular basis, as agreed by the family and volunteer generally in the home of the volunteer. Localities served Age range Anglicare Family Respite Knox, Maroondah and 6 to 12 Solutions Shire of Yarra Ranges Extended Families Australia All Eastern Region 0 to 18 Interchange Inner East Boroondara, Manningham, 0 to 18 Host Program Monash and Whitehorse Interchange Outer East Knox, Maroondah and Up to 18 Host Program Shire of Yarra Ranges Yooralla Family Based Respite Boroondara, Manningham, Monash and Whitehorse 6 to 12 Facility based respite: Facility based respite offers overnight and short-term accommodation in a house managed by a disability service provider. The service is staffed by paid workers accommodating a number of people with disabilities. Facility based respite services often have significant waiting lists. The following is a list of facility based respite services located in the Eastern Region. All services can be accessed by people living with a primary carer in all localities of the Eastern Region. Location Age Range Burwood and 6 to 18 Kilsyth Department of Human s, Children s Respite Department of Human s Adult Respite Doncaster and Heathmont 18 to 64 Scope Montclair Family Support Glen Waverley 6 to 18 Scope Knox Respite Wantirna 16 to 64 Scope Winbourne Mount Waverley 16 to 64 Road Alkira Facility Based Box Hill 18 to 64 Respite Oakleigh Centre Oakleigh 30 to 64 Residential Agapi Oakleigh 16 to 64 Support needs Intellectual disability Intellectual disability Mild to moderate intellectual disability Physical, neurological, sensory or intellectual disability or autism. Intellectual or physical disability 3

4 Yooralla Pendle Street Box Hill 6 to 64 Villa Maria Overnight respite Croydon, Lilydale, Wheelers Hill and Kew 6 to 18 Physical, intellectual, neurological, or multiple disabilities with complex medical or health issues. Flexible respite/brokerage: Flexible respite refers to services that assist with the navigation of the respite service system. Localities served Age Range EACH Respite for Carers All Eastern Region All ages EACH Shire of Yarra Ranges Shire of Yarra Ranges 6 to 64 Information and Referral Uniting Care Community Options All Eastern Region All ages Commonwealth Respite and Carelink Centre (CRCC) Yooralla Respite Coordination All Eastern Region 6 to 64 Yooralla Respite Information and Development in the East (RIDE) All Eastern Region 6 to 64 Brokerage refers to the provision of a funding package to pay for respite provided in a flexible manner in order to meet the needs of the individual with a disability. The funding can be used to purchase a range of respite options that meets the needs of the individual, their family and carers, on a short term basis. Interchange Inner East Flexible Family Support Program Brainlink Flexible Respite Fund for Families Impact Leisure s MS Australia ACT/NSW/VIC Yooralla Breakaway Flexible Respite Program Localities served Boroondara, Manningham, Monash and Whitehorse All Eastern Region Age Range 0 to 19 Disability Children needing one to one support. People affected by stroke, head injuries, brain tumour, progressive neurological diseases, such as Parkinson's disease or Muscular Dystrophy All Eastern Region 18 to 64 Intellectual disability All Eastern Region All ages People with Multiple Sclerosis and other progressive neurological conditions registered with MS Australia All Eastern Region 6 to 64 4

5 In-home respite: A paid worker provides assistance and support to a person with a disability in their own home. Able Australia Respite Mobile Overnight Support Yooralla in-home respite Localities Age served range All Eastern Region 6 to 64 City of Monash and All ages some surrounding areas All Eastern Region 6 to 64 Disability Occasional in-home and community access respite to people with all disabilities, including Deafblindness People who require physical assistance during the night Physical, intellectual, sensory, acquired brain injury or multiple disabilities. There are many private agencies that provide in-home respite on a fee-for-service basis. Again, the cost of this support is often prohibitive for people who do not have access to an external source of funding to subsidise the cost. Local government: Every Local Government Area (LGA) has a Home and Community Care (HACC) program that provides subsidised respite for people with a disability. Every council differs in the HACC programs available for people with a disability. HACC programs generally provide a small amount of in-home respite each week, ranging from 1 hour to 4 hours on average. Some HACC programs also coordinate social programs for people with disabilities living in their municipality. The cost of these services is means tested and therefore might be prohibitive for some middle and higher income families. There is a huge demand for HACC services, so people often find they are added to the waiting list when asking for support. The amount of support available also varies greatly between council areas. Out of school hours programs: During school holiday periods, additional recreational programs and camps are available for children with a disability. The following is a list of EMR out of school hours programs specifically for children with a disability up to 18 of age: Monash Special Developmental School Manningham Activities for Special Kids Whitehorse Integrated Holiday Program Mt Evelyn Special Developmental School Localities Age served range All Eastern Region 5 to 18 All Eastern Region 13 to 18 Whitehorse 5 to 12 Knox, Maroondah, 6 to 18 Yarra Ranges Shire Disability Intellectual disability or developmental delay 5

6 Children with special needs can access out of school hours programs including after school care, family day care and vacation care. If a program requires assistance to develop its capacity to support a child with a disability, the program can approach their local Inclusion Support Agency. A child must be registered with a program before the Inclusion Support Agency can be contacted. The Inclusion Support Agencies for the EMR are: o Inclusion Support Agency East Middle Melbourne Monash City Council (lead agency for Monash, Boroondara, Whitehorse,Manningham LGA s) P: E: inclusion@monashvic.gov.au o Inclusion Support Agency - East Outer Melbourne Knox City Council (lead agency for Knox, Maroondah and Yarra Ranges LGA s) P: E: knoxcc@knoxvic.gov.au Recreational respite: Recreation programs offer a fun experience for people with a disability, while at the same time providing parents and carers with a break. The following is a list of recreational respite programs for people with a disability. Yooralla Recreation Cerebral Palsy Support Network Teenage Social Program Vision Australia Independent Living s Oakleigh Centre Localities served All Eastern Region All Eastern Region All Eastern Region Age range 6 and above 13 to 18 All ages All Eastern Region 18 and RecLine above Inspire Camps All Eastern Region 18 and above Eastern Recreation and Leisure s Respite Program All Eastern Region 16 to 64 EACH Abound All Eastern Region 18 to 65 Hawthorn Aquatic and Leisure Centre All Eastern Region 5 to 21 Villa Maria Respite All Eastern Region 6 to 64 Wesley Mission All Eastern Region 8 to 25 Melbourne Belgrave South All Eastern Region 16 to Community House 64 Weekend Extend (fee for service) Disability priority given to people with high and complex support needs. Cerebral palsy People with a vision impairment. Intellectual disability People with mild to moderate disability People with mild to moderate support needs, interested in sports. People with an acquired brain injury. Mild to moderate disability. 6

7 Scope Recharge All Eastern Region 18 to 64 Balwyn Welfare Association Planned activity group Manningham YMCA Leisure Access Program City of Boroondara Health, Ageing and Disability s (social groups) Bulleen and Templestowe Community House Afternoon Social program Alkira Recreation Interchange Inner East Recreation Program Boroondara Manningham 55 to and above Boroondara 9 to 32 All Eastern Region 5 to 18 Whitehorse Boroondara, Whitehorse, Manningham, Monash Interchange Outer East Knox, Maroondah, Yarra Ranges Shire 18 to to 35 6 and above Mild intellectual disability Mild to moderate intellectual disability. Must gave registered with Interchange by 26 In addition to the programs on this list, there are many community based options that provide recreational opportunities that also provide respite to the family/primary carer. The purpose of these options is the recreational opportunity, not to provide respite. There no guarantee that someone with a disability can access the program without support from a parent/carer or paid worker. It was therefore decided that these options would not be added to the above list. The Eastern Region Respite Resource Guide 2009 provides a comprehensive listing of these options. Supported travel: On weekends and during holiday periods additional recreational programs are available for adults with a disability. Supported travel agencies do not receive funding from DHS to subsidise the cost of the holidays. Each agency defines the support needs eligible for their holidays depending on the level of support provided. People who require a higher level of support can often pay more for the staff ratio to be increased. The cost of supported travel options is often prohibitive for families without a form of external funding to subsidise the cost. 7

8 Parents/carer consultations Respite Information and Development in the East (RIDE) conducted a series of seven consultation sessions with parents/carers of people with a disability in collaboration with Care Connect. The purpose of the sessions was: For RIDE: An opportunity for parents/carers to provide feedback and comments contribute to this report to gain a local understanding of accessing respite in the EMR (see following pages). For Care Connect: To gain ideas about capacity building initiatives for older carers. A total of 82 parents and carers participated in these sessions. A survey was supplied after each consultation session to gather some further information from people involved and their thoughts about the exercise. 69 surveys were received in total. Provider survey Respite Information and Development in the East (RIDE) developed and distributed a survey to the 280 members of the RIDE mailing list and the people attending the EMR Disability Respite Network meeting on 2 September completed surveys were received. Suggestions for development of the respite sector The following provides an overview of the suggestions received from parents/carers at the consultations and the respite service provider surveys. The purpose of this feedback is to provide some guidance and ideas for the development of the respite sector in the EMR. There was overall feedback from both parents/carers and service providers that more respite services are needed as demand is greater than supply. There was specific comment about a need for increased services in the following areas: Respite opportunities for people aged 18 above Respite opportunities for children aged 6-13 with sport/recreation focus More opportunities to access short-term brokerage funding Lack of ability for people to access respite on a regular basis Provision of subsidised in-home respite options Provision of subsidised holiday programs for both children and adults Provision of more facility based respite opportunities Weekend recreational respite for people over age of 25 Lack of respite options suitable for young people Lack of respite options suitable for people with Autism. Lack of options with a sport/recreation focus Lack of options suitable for people with an ABI Holiday programs and camps for people with high and complex support needs. School holiday programs that support people with high and complex support needs. The following is a table with specific suggestions made by parents/carers and service providers. The right column states the actions to be taken by RIDE in an attempt to address the issue. 8

9 RIDE is not in a position to address all of the issues and therefore the action column for some suggestions has been left blank. The intention of this report is that those reading might consider the suggestions and develop actions wherever possible. Carer Suggestions Calendar of events for respite and support opportunities in the EMR including: carer support groups, respite opportunities, training for carers. This will allow parents/carers to know what s happening and when. Also improve sector knowledge of what is happening. Reduce amount of administration needed to access respite services. Respite sector would benefit from training and education about changes in service provision for Individualised Support Packages (ISP). Parent/carers would benefit from assistance with accessing respite services when transitioning from children s to adult services. Information about future planning is relevant to parents/carers of all ages. Currently training and information sessions are focused at aging carers. Further exploration is needed about the changing nature of respite and how families can achieve the outcome of having a break. Does recreation and community based options fit into the respite system and it is suitable to label these options as respite? provider suggestions Limited opportunity to access respite when needed, respite always has to be planned well ahead of time. Facility based respite is not accessed to full capacity during the week due to transport issue to and from school. Coordination of respite services for families with more than one child with a disability. Suggestions made by both carers and service providers Improve service information made publicly available - in the resource guide, in brochures, on the internet to avoid carers making phone calls to services that are not suitable for their son/daughter. It is difficult to understand the respite service system Occupational Health and Safety policy and procedures restricts the flexibility in which support can be provided. RIDE action Explore possibility of adding a calendar to respite east website RIDE to establish a project that aims to create a consistent intake and medication form to be used across respite providers. RIDE to focus on the provision of information to sector about selfdirected planning and creative use of individualised funding RIDE to establish a project to further investigate respite needs when transitioning from children s to adult services RIDE action RIDE action RIDE to improve the presentation of respite service information on website and in the resource guide. 9

10 Conclusion There is a variety of respite opportunities available for people with disability in the EMR. However, many of the options have significant waiting lists and people find they access programs on an irregular, ad-hoc basis. Both carers and service providers commented on the need for an increase in the provision of services currently available particularly for people aged over 18 and people with complex support needs. The navigation of the respite service system remains an issue. With so many programs and types of opportunities available, people are easily confused about what is most suitable for their situation. There are respite information and service coordination programs available to assist with the navigation of the system that should be frequently recommended by respite programs, schools and day programs. An issue might be a limited awareness of these options across the disability sector. Respite information and coordination programs need to focus more attention to the promotion of their service. However, it should be pointed out that an increased access to respite information and coordination services might simply result in more pressure on waiting lists as many respite programs are at capacity. Generally parents/carers expressed their contentment of caring for someone with a disability; however they require more opportunities to take a break in order to continue to care for their family member in the long term. The general consensus amongst the parents/carers who participated in the consultation sessions was a family has to reach crisis point before respite is accessed (or a needed increase in service is provided). Families would like to avoid having to reach a crisis point in order to access respite programs they require to maintain their caring role. The intention of this report is to assist with future planning of the EMR respite sector, it has therefore been distributed using the RIDE mailing list, respite east website, those involved with the consultations and surveys and Department of Human s. It is envisaged that the suggestions listed in this report will influence planning and service development in the EMR respite sector. 10

11 References: City of Boroondara Community Profile (2009) Do we need assistance? Retrieved May 5, City of Manningham Community Profile (2009) Do we need assistance? Retrieved May 6, City of Whitehorse Community Profile (2009) Do we need assistance? Retrieved May 6, City of Monash Community Profile (2009) Do we need assistance? Retrieved May 6, City of Knox Community Profile (2009) Do we need assistance? Retrieved May 6, Maroondah City Council (2009) Maroondah Community Profile Retrieved May 6, Profile.pdf Yarra Ranges Shire Community Profile (2009) Do we need assistance? Retrieved May 6,