ࡱ> {` gbjbjFF >,,}_j   8*d)&pd6p)r)r)r)r)r)r)$+h-)kr@kk))kdRj8p)kp)r'TH"`( d B'<)4)0)'z//`(`(8/(F(XFFF))QFFF)kkkk$   Physical Disability Council of Australia Ltd (PDCA)  P O Box 77 Northgate Qld 4013 Telephone: 07 3267 1057 Fax: 07 3267 1733 Email:  HYPERLINK mailto:pdca@ozemail.com.au pdca@pdca.org.au  HYPERLINK http://www.ozemail.com.au/~pdca www.pdca.org.au abn: 79 081 345 164 acn: 081 345 164 Inclusive Healthcare This paper is presented by the Physical Disability Council of Australia (PDCA) and is intended to provide information to assist in meeting the health needs of those who have a physical disability. People with disabilities in 2003 In May 2004, the Australian Institute of Health and Welfare released the following figures: One-in-five Australians reported a disability according to preliminary findings from the Australian Bureau of Statistics 2003 Survey of Disability, Ageing and Carers released today. Almost 4 million people reported a disability last year with the rate similar for males and females. The rate increased with age, reaching 81% for those aged 85 years and over. The age standardised disability rates for total males, females and persons showed little change between 1998 and 2003 and the pattern across age groups was very similar in these two years. The 2003 survey also found that one-in-seventeen people (5.9%) had a profound or severe level of core activity limitation (i.e. they needed help with one or more of self-care, mobility or communication activities), a slightly smaller proportion than in 1998 (6.4%). However, the rate for people aged 85 years and over dropped more substantially, from 65% in 1998 to 54% in 2003, with the decrease more marked for males than females. The experience of people with physical disability Regardless of individual differences, it can be said with confidence that people with a physical disability, particularly those with significant mobility handicaps: Will experience discrimination within the community in some form; Have great difficulty gaining access to public and private buildings because of physical barriers such as steps, steepness of site and lack of parking, narrow doorways, and lack of circulation space. This is especially so in rural and remote areas, areas of Australia with differing climates and environments (such as the rainy season in NT and northern areas of Queensland and Western Australia. In general, face greater costs than other people because of their disability (equipment, modifications to vehicles, household appliances and housing, home maintenance, transport, personal and health care and managing a household) Generally cannot access public transport and are reliant on taxis, with varying levels of subsidy throughout Australia, or on private vehicles. This is especially so in isolated, rural and remote areas of Australia where people with disability or parents of children with disability may have to travel for hours to access health care and in their own vehicle as many of the smaller towns in rural Australia do not operate a taxi subsidy scheme. In the main, face significant discrimination in finding a job and obtaining promotional opportunities, and often work for lower wages despite the avenues for redress through disability discrimination legislation. Again this is especially so for people with disability in the case of isolated, rural and remote areas of Australia, where options for employment are limited, and where they are available are usually of a physical manual nature such as those of a farming nature. Also there are few alternate day options for people with disabilities who live in isolated, rural and remote areas, such as respite, accommodation support and day services, which can result in depression and mental health conditions that need medical intervention. In general have lower incomes than their age/education peers due to greater difficulties in getting employment and in achieving promotion. Education options in isolated, rural and remote areas are limited and necessitate moving to the coastal cities of Australia. This is not always physically or financially possible for people with disability. Have fluctuating income if their impairment is associated with medical conditions leading to episodic periods of hospitalisation and/or absence from work. (Such people include some people with spinal cord injury, multiple sclerosis, muscular dystrophy, polio (post polio) motor neurone disease, Friedreichs ataxia etc. Lack access to affordable, secure and appropriately designed housing is a critical issue for people with a physical disability. Lack of access to such housing has a major impact on our capacity to participate fully in the life of the community and to live as independently as possible within our own households. Lack of appropriate accessible housing can lead to stress or mental health issues as demands are made on the person with a disability to cope outside of an accessible environment. Are most often unable to access main stream Education both at Primary, Secondary and Tertiary Levels. This is not only to do with physical access (which is a problem) but it is also a perception of people with a disability not having the ability to achieve success in Educational endeavours and the perception and attitudes of teaching staff, that people with disability are difficult and will disrupt the other students. Of course this reflects more on poor teaching methods or lack of appropriate resources and support in the education arena. Experience lack of Education which in many cases results in people with disability not able to voice their concerns with medical practitioners. Lack of a voice also affects employment opportunities and can result in poor self image and confidence Lack access to GPs and medical practitioners and is difficult or non existent at best for many people with disability. In isolated, rural and remote areas this is especially problematic because of small population numbers over large areas and the availability of suitable accommodation for a practice that suits all needs. Experience the lack of understanding, knowledge and expertise within community health systems in each state and territory in Australia. Often people who work in the health sector are unaware of current disability philosophies (medical model versus the social model) combined with the paradigms of service delivery being paternalistic and condescending in approach do not lead to having an individuals needs met in an equal partnership and inclusive way. The cost of having a disability This report is the result of a project commissioned by the Physical Disability Council of Australia to report on a Needs Survey, which was completed in 1998 by 600 people with physical disabilities across Australia, with a brief to emphasise findings relating to the additional non-discretionary cost of living for people with disability. The project has run parallel to the debate initiated in November 1999 by the Commonwealth Government when it set up the Reference Group on Welfare Reform (2000) (Reference Group), which reported its findings in August 2000, in a document that has become known as the McClure Report. It has been impossible and it would have been wrong to isolate the project from this debate, since the PDCA project was to a large extent initiated to inform precisely this type of debate. This paper, therefore, has a good deal to do with a challenge that was placed before the National Caucus of Disability Consumer Organisations by a member of the McClure Taskforce. The challenge was to outline a practical model to enable government to offset the non-discretionary additional cost of living for people with a disability. The challenge has had a dynamic of its own, and what was originally a report became a consultation paper in which various options were presented and discussed with the disability sector for feedback. The current paper is the result of that feedback. Before embarking on a discussion of models, there are a number of methodological issues, political issues, and some economic issues that must be raised. These issues are critical to an understanding of what is involved in a lobbying effort to offset the non-discretionary additional cost of living for people with a disability. The Reference Group has made some of the work easier because a number of important points that people with disability have been making for several years have finally been acknowledged. In particular, the Report has acknowledged that: people with disability face a range of obstacles to employment, including infrastructure and equipment obstacles, and attitudinal barriers (p.26); there are additional costs of living for people with disability (p.23); there are additional costs of participating in the work force (p.29, p.38); and People with disability need to be seen as individuals with widely divergent (p.9). The medical/health experience of some individuals: Case study 1 (SS) Female - Uses a wheelchair for mobility. Situation: Individual needed a Pap smear and investigation of other matters. Medical Practice did not have an adjustable table and female was referred to a specialist. Result: Pap smear had to be undertaken in a hospital theatre as well as other relatively simple investigation procedures. These would normally be carried out in doctors rooms, and resulted in a whole day at the hospital and making a simple matter a traumatic experience. Case study 2 (KB) Male - Quadriplegic uses a power wheelchair Situation: Individual experiencing severe spasms and needed urgent medical treatment at night. He visited the emergency department of St George hospital in Sydney and after waiting 4 hours and of a valium later he was told to go home with no opportunity for treatment for over a week. The hospital demonstrated they had little or no experience of the ongoing health issues of people with quadriplegia from the nursing staff to doctor. Case Study 3 (IH) Male Paraplegic (T4) Situation: Diagnosed with a dose of the flu and was unwell over several weeks. He went back to his practitioner 2 weeks later who told him he still had the effects of the flu. That night he was taken to hospital and admitted. Over a period of about 7 days he was suspected of having Gilliam Barre syndrome until the registrar from the spinal unit was called in who diagnosed Transverse Myelitis. Later he was transferred to the Spinal Unit for treatment. Since that time, he has met a cardiologist who has had experience in misdiagnosing Transverse Mylelitis and has asked IH to speak with medical students. IH also acts as a conduit between Australia and the USA where because of the larger population and more awareness, there are more people diagnosed with Transverse Myelitis. IH says The Outcomes of Transverse Myelitis are not specific to becoming a paraplegic as some people can recover to levels that are near to their pre contraction level. And What is needed are Education programmes that teach the medical students coming through universities about these conditions, Case Study 4 (GD) Male Cerebral Palsy\ Situation: This person experiences Athetosis (involuntary movements). On one occasion he needed an X-ray and attended Perth Rehabilitation Hospital (where it is assumed that medical staff are experienced or have had exposure to people with disabilities). Staff became frustrated trying to get a scan of his back and took the very thin mattress off the X-ray bed, and placed sand bags on him to weigh him down. He stated that If you dont lie still we will have to knock you out! Later GD heard him discussing his difficulties with fellow workers while waiting for film to develop. He was overheard to say further this guy makes Steady Eddie look like the rock of Gibraltar. When GD complained about his attitude to the reception staff on the way out, staff handed him some forms and told him to put it in writing. This he did (including a letter to the Editor) and received an official letter of apology for the insensitivity shown by the X-ray staff! Case Study 5 (GD) Male Cerebral Palsy Situation: When GD takes a carer or advocate the medical practitioner proceeds to talk about symptoms and treatment with the advocate instead of GD. On another occasion GD was in the role of advocate for a person with Epilepsy, who did not appear to have an obvious disability. The doctor immediately assumed GD was the patient These case studies have raised the issue for PDCA, that many medical practitioners do not have information on specific disabilities or some of the complications that can result from having a disability. One area in particular stands out and that is the area of contra indications of a disability, for instance what happens for a quadriplegic if they become ill. Where do you look first? How to deal with secondary issues to the disability for say, someone with MS or Motor Neurone Disease? Most times the person with the disability knows more than the health professional about their own disability. These issues are further complicated by the ageing factor where additional provisions will have to be made in the not too distant future. HealthConnect For this reason, PDCA welcomes the recent initiative by the Federal Government in the recent budget HealthConnect - Over the next four years, $128.3 million will be provided toward a national health information network, HealthConnect. This will involve the storage and exchange of consumer health information between service providers on a secure network. Consumers will also have the right to read and access their personal health information. PDCA believes that this will go some way toward addressing the lack of education and information on specific disabilities; however we also believe medical students need more training in these areas and additional input from the disability sector during their studies, to learn the every day reality of disability. Other areas of concern: Today there is great concern about the levels of obesity in our community, and people with a disability are not excluded from this. In fact in most instances and for any number of reasons, medications, lack of mobility, diet restrictions, etc, people with disabilities are more prone to being overweight or obese, yet there are few programmes that include people with disabilities. For this reason PDCA has been seeking exercise programmes that are modified for the use of people with disabilities and this year will be seeking funding resources to produce some specific programmes which include diet and exercise. PDCA also believes that the medical profession should be concerned about those with a disability and where necessary assisting the community to develop programmes for people with disabilities to participate in health lifestyles. Recommendations In the recent consultation by the Royal College of General Practitioners, PDCA submitted the following recommendations: Recommendation 1 Where a patient has communication impairment, all efforts should be made to find alternate methods of communication so as to ensure the patient is able to directly communicate health concerns. Where this is not possible an advocate should be offered or requested to be in attendance with the permission of the patient. Recommendation 2 Where the communication needs of a patient require written information, this information should be made available in alternate formats and language such as braille, audio cassette, or a language other than English. Recommendation 3 All methods of diagnosis, treatment, management and outcomes relevant with clinical practice guidelines should be conveyed to the patient at the time of consultation ensuring that where possible the patient is fully away of the diagnosis, treatment and management. This includes methods of communication indicated in Recommendation 2 Recommendation 4 Patient medical records where possible should include all information relevant to previous conditions, including medical history, allergies, and current medication Recommendation 5 The practice should keep informed of the range of community health services available including self help organisations such as Post Polio Clinics, Paraplegic and Quadriplegic Organisations, Spinal Units, Stroke Groups, Arthritis clinics, audiology, speech therapy, Technical Aid to the Disabled (TAD), Alcoholics Anonymous, Gamblers Anonymous, Counselling, Self Help, Exercise clinics, Weight Loss clinics, and disability self help groups such as Multiple Sclerosis etc. Recommendation 6 Continuity of Care should be available to all patients who need follow up. This includes rural and remote areas, and ensures that follow up care is available for all patients where needed, including home visits by practitioners. Recommendation 7 The practice ensures that all staff observes and is aware of the following in relation to patient care: The Disability Discrimination Act 1992 The Race Relations Act The Sex Discrimination Act Occupational Health and Safety legislation Disability Services Act (if in receipt of Commonwealth Funding) Recommendation 8 Practitioners observe and uphold patient choice and decision making. Recommendation 9 The Practice has available a complaints process for the use of all patients if necessary. Recommendation 10 Practitioners observe privacy legislation in relation to patients records and care and treatment. All practices provide access to the premises and to the surgery itself, including equipment contained within the surgery, in accordance with The Disability Discrimination Act 1992. This includes accessible entry, parking facilities, toilet facilities, waiting areas and surgeries including examination areas and examination tables. For more information on a recent survey on the number of accessible examination tables see National Survey on Examination Beds in Doctors Surgeries 2003 conducted by Access for all Alliance (Inc). This survey found 3553 surgeries across Australia had fixed height examination beds compared to 719 adjustable height examination beds across Australia. This represents 5.3% of surgeries serving the whole community including people with mobility disabilities and the ageing population, whose numbers exceed 30% of the population of Australia. Recommendation 12 For further information on Access to Premises Standard currently being developed, contact the Disability Rights Unit at Human Rights and Equal Opportunity Commission.  HYPERLINK "http://www.hreoc.gov.au" www.hreoc.gov.au Recommendation 13 All practices should ensure that patients are not discriminated against in obtaining appropriate healthcare by high-priced costs in healthcare delivery. See PDCA Cost of Disability Research on  HYPERLINK "http://www.pdca.org.au/cgi-bin/pdca/contents.pl" http://www.pdca.org.au/cgi-bin/pdca/contents.pl Recommendation 14 The medical profession should be concerned about the lack of exercise for those with a disability and where necessary assist the community to develop programmes for people with disabilities to participate in health lifestyles. Recommendation 15 PDCA believes that the training needs of doctors and other medical practitioners including hospitals and other private clinicians and clinical areas need to take into account the following: equipment needs of people with disability, the reality of living in the community and the support needs that should be met, the cost of medical care for people with disability isolated, rural and remote residents requiring care, especially those with a disability the different models of disability including the social model observed by people with disability themselves; Recommendation 16 Womens Health: Breast screening areas and facilities for pap smears need to be accessible for women with disabilities with an electric examination table and support person available to assist a woman with a disability. Mens Health: This also applies to men with disabilities. In recent media stories there has been much written on the increase of prostate cancer and the increased incidences of breast cancer in men. The examination facilities available to women are not always accessible and therefore will not be accessible to men. Conclusion: pdca believes that it is the right of every Australian to have access to and receive appropriate health care. Lack of appropriate healthcare often leads to increased ill health and therefore adds to the burden of cost, most especially to people with disability. PDCA believes there should be partnerships with all healthcare providers and the disability sector in order to educate one another on the requirements of delivering first class healthcare to all. PDCA takes this opportunity to offer the expertise of members and council directors to all medical professionals including nursing, medical practitioners and specialist medical practitioners, hospitals (public and private), physiotherapists, occupational therapists, speech therapists, and dentists as well as all alternate healthcare professionals such as acupuncturists, sports injury specialists, podiatrists, chiropractics etc and would be delighted to enter into a partnership with other disability sector members that would help to increase the standard of health care delivery for all. In closing, PDCA offers the following questionnaire that has been placed on the pdca website ( HYPERLINK "http://www.pdca.org.au" www.pdca.org.au) to assist those with a physical disability to access affordable, accessible and appropriate health care: General Are they familiar with treating people who have a similar disability or condition? Are they aware of the important health and disability-related issues specific to disability conditions? How do they keep current on issues related to your specific medical and health needs? How many universities and Colleges aware of specific disability issues? For example Australian College of General Practitioners etc? National organisation for Physiotherapists etc Physical Access Is there parking specifically designated for people with disabilities (permits to be used)? Is the office physically accessible to you? Can you reach/see the receptionist? Can you convey personal information at the reception area in private? Is there a wheelchair accessible toilet available, with all the required sanitary requirements? If you need an adjustable examination table, do they have one? Can they assure you it will be available for your visits? What happens in the event that the examination table is not accessible? Is there a nurse to assist in transferring or do you need to take someone with you? How are you advised of this need? Who covers for your practitioner (partners, other providers) When they are ill or on leave? How is the information specific to your disability passed to this practitioner? How long is the typical wait in the reception area? Is there space for wheelchairs or other mobility aids? Are the referring hospital privileges and x-ray services in the same area or other accessible and convenient locations? Communication Access Does the practice have access to language interpreters? Do you feel comfortable talking with the practitioner about your disability? Do they acknowledge your own expertise about your disability? Do they take adequate time with you or do you feel rushed? Do they encourage your bringing a support person (friend, family member)? Are explanations understandable? Do they provide full information on medication, tests, procedures, treatments, etc.? Do they ensure that you understand and agree with decisions? Do they give you information materials in a format accessible to you? Payment Does the practice bulk bill for those who hold a Health Care Card? Can you negotiate for the practice to bulk bill if on a low income?  HYPERLINK "http://www.jik.com/stratlk.html" \l "Qualities and#Qualities and" Relationship Do you feel respected and listened to by your practitioner? Will your practitioner be guided to read/find out the latest information on your disability? Are they comfortable with a partnership approach and sharing the decision-making process with you? Will they give you copies of your x-rays, copies of medical reports and visit summaries for maintaining your own health records? 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