Home and Community Care Survey Summary
Access to Home and Community Care Services (HACC) for people receiving palliative care
Background
The Home and Community Care (HACC) Program is a joint Australian, State and Territory Government initiative to help people in need. The NSW Department of Ageing, Disability and Home Care administer the HACC Program in NSW. The program helps frail older people and people with a disability who would otherwise be prematurely or inappropriately admitted to residential care to live independently in their own home.
Access to HACC services for palliative care patients in NSW has been problematic for some time. In 2007 a report was produced by Melissa Cummings from the NSW Rural Palliative Care Nurses Group following a survey of 20 its members that focused on issues of HACC eligibility, timely access and coordination.
Responses to the survey were mixed. Those who had little difficulty in accessing HACC services for their palliative care patients were typically from small, remote communities where it was easier to develop strong working relationships with other agencies. The Report also highlighted themes arising from those who had difficulty in gaining access to HACC services. These included:
- HACC services believe that palliative care clients were not eligible for HACC services;
- Excessive time taken for a service to be provided, with waiting times reported of up to eight weeks just for assessment;
- The requirement to re-apply for services at the commencement of each month, if unsuccessful the previous month;
- Confusion around accessing services, particularly when there were a number of providers in the same regional area providing the same services;
- No feedback provided on assessments.
(Cummings, 2008)
In 2009, at the request of the Primary Health and Community Partnerships Branch, NSW Health, the Statewide Centre for Improvement of Palliative Care (SCIP) undertook a similar survey to assess if issues of timely access, eligibility and coordination to HACC services for palliative care patients had changed. The survey was distributed through members of the NSW Palliative Care Service Development Officer network in each Area Health Service between April – July 2009.
A summary from the on-line survey is attached as an appendix.
Findings
A total of 37 respondents from the Statewide Palliative Care Service Development Officer Network responded to the on-line survey.
70.3% of network members currently experience problems with accessing HACC services. The three top problems experienced are: domestic assistance (96.2%), personal care (92.3%) and respite care (65.4%). Multiple responses were permitted.
Following publication of an article in the Department of Ageing, Disability and Home Care (DADHC) Newsletter outlining palliative care eligibility for HACC services (a key strategy to improve awareness of palliative patients’ eligibility) 73% noticed no improvement in accessing HACC services.
89.7% of respondents experienced difficulties accessing HACC services due to full capacity.
64.9% of respondents indicated that 1 - 5 clients per month experience problems accessing HACC services.
On average, 27% of palliative care clients wait 2 weeks for HACC services assessment, and 21.6% wait 1 - 6 days. Once an assessment has been completed, 24.3% waited 2 weeks and 24.3% waited 1 - 6 days.
40.5% of respondents believed that the number of HACC service providers contribute to the difficult of accessing services
94.6% of respondents were successful in accessing other services such as Commonwealth Carer Respite Services
Only 23.3% have accessed HACC High Needs Pool, and 6.9% have accessed an Attendance Care Program
70.3% of respondents indicated that accessed HACC services were 'good', 24.3% rated them 'excellent' and 5.4% rated them 'poor'
Qualitative feedback
Respondent feedback highlighted a range of continued issues related to palliative care patients’ eligibility and access to HACC services as well as issues related to practitioner understandings of HACC services. The following themes were identified:
Ambiguous eligibility criteria
- Carer Respite and other community services have at times been equally difficult to access for palliative care patients. I also believe the reference to palliative care in the latest HACC guidelines/agreement … is very ambiguous and does nothing to reflect the eligibility of HACC type services by Palliative Care [patients].
De-centralised HACC services vs One-stop shop
- I feel it would be more effective to have de-centralised HACC team to work with local Dept Health Services. This would offer a more personalised service with a continuum of care. A memorandum of understanding and regular meetings could reduce crisis situations for patients and families.
- I believe that the number of different services seems to be confusing, Who can access what service for which requirement[?] It appears that instead of enhancing the one service to encompass newly identified needs, a new service with similar criteria is invented…
- A one stop shop for access and referral would reduce the amount of time spend ringing around to see which service provider has service availability.
Service Gaps
- There is a great complexity in the means by which services can be accessed (we actually have to attend a community information session in the hope of clarifying some of this). Also, there are simply not enough available services to meet the needs of an aging community with limited alternative options. We have a significant number of patients who are unable to die at home in accordance with their wishes due largely to this major gap in services.
- …[XX] Hospital does not have access to Compac which allows services (HACC) for 6 weeks after discharge and this time span would suit many palliative care patient needs. Social workers therefore have to access HACC services which often are too late in commencement for palliative care patients.
- In the past our service has been told that palliative care patients are ineligible for HACC services as they are not considered 'longterm' clients. In more recent times, success of application is variable, depending of time of year and hence funding. eg less success near end of financial year.
- Many patients apply for HACC services only to get a letter several weeks later saying that HACC cannot provide service, this is usually for home care...
Service waiting times
- It's a shame that palliative care clients are made to wait for access to services... some have actually died prior to HACC assessment has been completed.
HACC service coordination
- There is an overall lack of coordination in accessing HACC services. The process could be more streamlined with one entry point.
- I find it very difficult to advise clients on what to expect as it seems to constantly change. The terminology used above. "Attendance care program" and "high needs pool" are terms I have never heard of before. I think that some clients do not get access to these services because palliative care practitioners themselves unaware...
HACC Service Complexity
- HSNET web site too difficult to navigate, this is a deterrent to using the site * HACC services are good once you get than in place but most difficult to actually get the service in the first place *knowing which services provide what care is confusing
Discussion
Respondents from the NSW Palliative Care Service Development Officer Network identified similar issues to those identified by respondents from the NSW Rural Palliative Care Nurses Group in 2008.
Themes such as ambiguous eligibility criteria, HACC service gaps and prohibitive waiting times continue to contribute to inequities in service access for palliative care patients. Opinion was divided as to whether a de-centralised HACC contact point would offer a more personalised and timely service compared with a ‘one stop shop’ idea. Others described HACC services as complex and often confusing which can contribute to difficulties in advising clients on what to expect. The HSNET website was viewed by one respondent as “too difficult to navigate” and “confusing”.
However, a few respondents highlighted examples of adequate or exceptional HACC service delivery for people receiving palliative care in NSW:
- Carer respite is one of the best response times even if required on the weekend.
- …I have always found that the local HACC services provide care / equipment when they receive referrals for our [palliative care] clients.
Where to from here?
In order to raise these long-standing concerns about access to HACC services for people receiving palliative care in NSW, SCIP will communicate the results of this survey to NSW Health through the Primary Health and Community Partnerships Branch. SCIP will report any feedback or actions taken by NSW Health to the NSW Palliative Care Service Development Officer Network as well as members of the NSW Rural Palliative Care Nurses Group.
Reference
2008 Cumming, Melissa. Access to Home and Community Care Services (HACC) for people receiving palliative care Discussion Paper. NSW Rural Palliative Care Nurses Group (unpublished).
Survey questions
1. Do you experience problems in clients accessing HACC services?
If no, did you previously have problems and how were they addressed?
2. Have you noticed an improvement is access since the DADHC Connections article published in October 2008?
3. If you currently experience problems, is the problem:
HACC service provider advice that palliative care patients are ineligible;
Service at full capacity;
Patients needs are too high to be met though the HACC Program;
Other – please specify;
4. How many clients on average per month experience problems?
5. How long on average does it take to obtain an assessment for HACC services?
6. How long on average does it take to access a service, once an assessment has been completed?
7. Does the number of services providers in the area contribute to the difficulty of accessing services?
8. Have you tried/been successful in accessing:
HACC High Needs Pool, or
the Attendance Care Program, or
Extended Care at Home (EACH) for clients with high care needs?
9. Have you tried to access/been successful in accessing other services such as Commonwealth Carer Respite Services?
10. For those clients for whom who have accessed HACC services, what is your view on the adequacy of these services?
11. Any other comments?