(4,800 words)
John is a 60 year old man who uses a wheelchair for mobility. At the age of 5 John moved to a large residential institution. Two years ago he moved out of the institution to a new group home in the community that he shares with four other residents John likes living there, particularly being able to have a room to himself. He understands much of what goes on around him, but has only a very few words to communicate his views on the world. One of his chief interests is football and he has been following the Hawthorn football team for many years. He also loves to eat and is a bit overweight. John does a minimal amount of exercise following a program prepared before he left the institution.
For the past 10 years John has attended an arts and drama program for people with intellectual disabilities which is based in a community college. Here he participates in drawing, cooking, watching videos and in at least two performances a year. Recently the new house supervisor organised for him to retire, so now he only attends for three days a week and is at home for the other two days. On these two days a staff member is available to support him in whatever he chooses to do. So far they have gone for a walk in the local park, visited a friend, gone shopping and are investigated opportunities to go fishing.
John has limited movements in his arms and his reliance on a wheelchair makes participation in domestic chores difficult. Anyway the kitchen benches are too high to be accessible to anyone in a wheelchair. He gets around independently in an electric wheelchair and he can transfer himself to and from his wheelchair. He requires assistance with all personal care tasks, but with modified plates and cutlery he can feed himself.
John knew the four other residents from the institution and is particularly friendly with one of them. He also has a friend at the day program who just recently he has started to visit at home. the pace of the household has slowed since they first moved to the community and the search for activities in the local area has scaled down.
Johns mother lives in a country town, two hours drive from the house. She visited him regularly while he was in the institution and she has continued to be very involved in his life. However, her vision problems mean she can no longer drive and she is reliant on staying in touch by phone now. John is an only child and his father is dead.
In the two years that John moved, all the staff in the house have changed. The first house supervisor created a spotless, well cared for home and she mothered the residents. She left after a year to be replaced by a series of short term appointments. The new house supervisor has a very different approach, much more focused on building each individuals life, not the state of the house.
He has some very definite views about the rights of people with a disability to retire, just like everyone else.
1) In what respects is John ageing successfully? (Consider physical, social and psychological aspects)
Johns well-being appears to be good and when I consider Johns life in regard to the areas of life that are important to people (refer http://www.dhs.vic.gov.au/ds/kci/quality.html) I can see that he is ticking most of the boxes. I have labelled each life area with (+Physical ) (+Social) (+Psychological) where I believe John is ageing successfully in these aspects of life. The areas are:
. Learning, John has been investigating opportunities to go fishing and this will involve learning. He is learning about the activities that a person who is retiring would consider fun pastimes, he will also be learning about relationships with people outside an institution. (+Physical ) (+Social) (+Psychological)
. Community, John is involved in the community at his community college and he potentially has the opportunity to become involved in other communities now that he is retiring. (+Physical ) (+Social) (+Psychological)
. Independence, John has definite views about the rights of people with a disability to retire I believe this would mean he has self determination skills. John is able to self transfer at home These are signs of successful ageing. (+Physical ) (+Psychological)
. Safety, I hope that this is the case for John, the case study does not suggest he is unsafe. (+Physical ) (+Psychological)
. Building relationships, John has started to visit a friend at home. Social isolation is a very real consequence of retiring from day placement, for this reason it is important that John is encouraged and supported to learn a new way of staying in touch with friends. (+Social) (+Psychological)
. Choosing supports, John does have a number of supports and this would indicate there is diversity. He is choosing to change from all week long at the community college and the activities offered there, to being supported on a 1:1 basis and choosing individual pursuits on 2 days per week and 3 days remaining at the College. This indicates that he is choosing supports. John has expressed an interest in fishing, hopefully he will also explore other meaningful leisure opportunities with this worker. (+Social) (+Psychological)
. Communication, although John has very few words to communicate with, he is a creative person who participates in Art programs at the community college. (+Social) (+Psychological)
. Work and employment, John is beginning to retire, but he has been involved in stageing performances at the community college twice a year. Presumably he will still be involved in the performances even though he is attending the College on fewer days per week. (+Physical ) (+Social) (+Psychological)
. Exercising human rights, John has vies about the rights of people with a disability to retire Just like everyone else, I believe this indicates John would have a good grasp of his human rights. (+Psychological)
. Expressing culture, he is a keen Hawthorn Football Club supporter, he is expressing culture when he supports his team. (+Physical ) (+Social) (+Psychological)
. Having fun, I don't know if John is having fun, he does seem to participate in a diverse range of activities which would be enjoyable to him because he has chosen these things. (+Physical ) (+Social) (+Psychological)
. Exercising control over how he lives, John would have a bedroom that has a decor of his choosing, he would participate in menu choices. He is unable to use the kitchen due to accessibility to the bench tops, I believe he would choose to change this if he felt he could, he is keen on cooking at the community college. There are certain limits in choices that can be made when living in supported accommodation, meal times and bedtimes are limited due to staff. (+Physical ) (+Social) (+Psychological)
. Health, John's health at the age of 60 is moderately good. The case study does not mention any medical conditions that are particularly related to ageing and living a mainly sedentary lifestyle. While he already experiences reduced mobility and very likely also has incontinence conditions, there is no mention of common conditions such as diabetes, arthritis, hypertension, vision or hearing loss or cerebral vascular disease. Although he is a bit overweight, John is following an exercise and movement program which has been part of his daily routine for many years. His commitment to regularly exercising is a good sign that John is ageing successfully. Johns healthy life expectancy in Australia is 69.6 years which is the sixth highest in the world. (+Physical ) (+Psychological)
. Moving around, the State Disability Plan makes provision for public transport to be accessible for people with disabilities, these services are changing. John would also have a taxi card and the Group Home would be likely to have their own vehicle. The case study states that John went for a walk during his 1:1 shift. John has a diverse range of transport options for moving around. (+Physical ) (+Social)
. Paying for things, The case study does not state if John pays for things. This is such a simple task for most of us, we do it routinely, but people with disabilities rarely have the opportunity to pay and it makes them feel great when they do. If John does not already have skills in this life area now would be the perfect time to start a learning program as he has the time and individual support to succeed.
.Where to live, John likes living where he lives and he likes the people he lives with, he likes having his own room. He lives with people he has known for some time and one person he particularly likes. Even though John does not live with family, living with friends is a good setting for his security. (+Social) (+Psychological)
2) How could an optimal level of health and fitness be maintained for John?
Health
. Promote a healthy lifestyle. Small changes to a persons eating can have a huge effect in the long term. John is a bit overweight but he is exercising and he is self transferring. If John's support network could work together with him to reduce up to 5kgs per year over 2 years and maintain that weight John's health may be maintained at the good level he currently enjoys. A health professional such as a dietitian would be in order.
. Have a comprehensive health check up. Reviews with the GP such as CHAPS can unearth hidden health concerns before they become a big problem.
. Mental Health, John’s support network should talk to a Counsellor about the disruption to his relationship with his mother and find ways to communicate with John about and prepare him for the fact that her advancing age means she is ageing very quickly. Social stories about people we love and what happens when they die would be helpful.
. Match John with a Volunteer, many organisations have a volunteer network. Service users can be matched with a volunteer that shares their interests. The volunteer could visit John and do activities with him that he wouldn't normally do with workers, things that he would normally do with a friend. Like go and see a movie, talk about the news or be invited out for a meal.
Fitness
. Maintain skills and Increase capacity, have Johns exercise program reviewed and arrange ongoing therapy with a Physiotherapist and Occupational Therapist to identify areas of deficit and development of alternative skills. For instance an Occupational Therapist can recommend utensils and tool that can be used by someone with limited movement and a physiotherapist can help by pinpointing exercises that will develop strength to relieve pain and increase capacity.
. Actively engage John in life. John could be responsible for a part of the household duties, he could even receive some payment for his work. He could have a vegetable garden or or grow roses, he could do the dusting in the house, post letters for the office, pick up and deliver goods for the household and neighbors, he could work as a dog walker, or he could also be a volunteer at a local organisation such as an opportunity shop or homeless persons service. All these activities mean that John would be engaged in valued work which would build his fitness, community involvement, sense of belonging and personal worth and could bring personal gain as well.
. Find a new way to move. John has expressed an interest in fishing. Casting a line out involves movement that would be good exercise for John. A fly fishing club could be a good way for John to meet people and get exercise. The Southern Fly Fishers Australia Club has an accessible concreted casting pool located at their clubrooms and they have casting practice and tuition evenings once a week, with the pool open for use at all times of the week.
3) How is Johns sense of continuity and belonging under threat and in what ways might this be tackled?
Sense of continuity under threat:
The difficulty of maintaining a relationship with his mother is a significant threat to Johns sense of continuity. The fact that his mother is continuing to be very involved in Johns life is important but their relationship was previously a face to face one. John uses a few words to communicate with the world and this means that his telephone conversation is limited. John would give and receive affection and love through touch and expression, he would observe his world quite carefully to receive the information he requires. Touch, expression and observation are not available over the telephone.
John's mother is also ageing and she will probably not outlive John. Her declining health means that John may soon need to become prepared for the time when his mum dies.
Sense of belonging under threat:
John's sense of belonging is also under threat from leaving the college. He will have 2 at home days. Because of his disability John may find it harder to adapt to change and cope with the sense of loss that retiring causes. The fact that he has chosen to retire could make it easier for him to adapt to the change but the change in routine will still have a significant impact. Scaling back John's days at the Community College could also mean that his involvement in the productions would be reduced. This could also translate to a loss of status, a lower profile and a sense of disempowerment
Support for John during the adjustment period:
John's support network will need to be aware of this adjustment period and respond as required. Support for John could include using:
. Social stories, with lots of pictures of John and his mum, a story could be written that includes their together times such as things that they have done, places they have been and the people they know.
. DVD showing photographs of Johns family pictures that can be played on the television, accompanied by music that John likes.
. Ask John's Mother for the name of someone from her family who would be willing to develop a relationship with John. Including another family member that is closer to John's age or younger to build a relationship with him will continue the family's involvement and help ease the transition for John.
. A photo collage of all the productions that John has been involved in could be displayed in the house. This will become a talking point for workers and service users and Johns achievements will be on view for everyone to see. This could be a great morale booster for John, seeing himself doing things that made him feel important and happy can help him feel happy in himself and build his self confidence to choose other activities.
. A retirement party. John could host a retirement party at the Community College. Everybody is usually happy about having a party, there could be whistles and party hats, party food, games, and lots of friends all wishing John well in his retirement. He would feel special and loved which is a great way to be supported through change.
Ways his support network can assist:
John routine is changing and while that can present challenges it can also present opportunities for introducing new activities. These could be:
. Beginning to Travel. One activity that could be initiated is traveling on the train. John could take a ride for short distances then increasing to longer ones such as going into Melbourne on the metropolitan train network. This could prepare John for the possibility of taking a holiday. He could travel to the country town where his mum lives.
. Purchasing new "toys". Equipment such as Video Camera which could be operated easily by John if it was attached to the frame of his wheelchair. Some photographic equipment has a remote control function which would make operating the camera easier for John with his limited movement. A video camera could be used to record John's visit to his Mother. It also records voice, John's mums could tell some stories about John so that they can be preserved and written down as social stories, played on the TV as a DVD or included in a book about me. All these resources can be used by John when he is feeling the absence of his mothers relationship.
. Joining a club. John could be assisted to join a club. His love of the Hawthorn Football club could translate into being a member, going to games, visiting the training sessions, getting newsletters, and going to any meet and greet opportunities with the players. Other inclusive community opportunities would exist locally. A local football club may play in Hawthorn colors and John could be supported to join that club. He could become involved in the local football community.
. PCP. A person centred plan should exist for John already and even though it is not recommended to do a new plan at times of transition or crisis there would be ways his PCP can be tweaked. A review of his plan is exactly what needs to happen if it hasn't already been done.
. Support John's health and maintain his skills. Johns situation could rapidly deteriorate and choices could be significantly reduced if his health suddenly declines or he looses his skill level as a result of his part retirement. It is important that John stays motivated to exercise and does not change his diet (to cafe visits for coffee and cake in the afternoons) significantly in this transition time.
. Advocate for John at a systemic level to change policy and bring awareness of the issues people face when ageing successfully. When someone has a support network advocating for them, changes are much more likely to happen which can benefit all people ageing in an accommodation service.
4) Do you think John should retire? Discuss the advantages and disadvantages
No, I don't think that John should retire fully at this stage. It could actually be quite detrimental to him at this stage of his life. Given that he has good health and meaningful work at the Community College. I would like to see John maintain his relationships and social interaction at that level. Especially as his relationship with his mother is in transition. If John was starting to show signs of poor health or exhaustion I would be more inclined to say "yes, try out retiring and see what you think" or lobby the Community College to begin a retirement group.
At present I do not see any reason for John to retire. He is still young at the age of 60. I do dot believe that a rigid age based retirement policy works for many people and in John's case I think it would be detrimental. If John needs to take a break to go and visit his Mum or take a holiday or just have a bit of an extra rest, he could investigate the prospect of long service leave, or holiday leave from work/college. I think that John should have an evaluation dated 3 months after his part retirement began and find out if it is really what he wants to do, if he is happy and socially interacting or if he is disappointed and feeling like he is missing everybody.
Ultimately it is Johns choice to retire and he should be supported to have a self determined life. I believe that John needs to have a trial period of retirement to see how he goes. He should be encouraged to have all the information he can possibly source, including talking to other people who have retired, before making his decision.
Advantages
. John has definite views about about the rights of people with disabilities to retire, just like everyone else. Advocating for himself would make him feel good, he would experience a lift in his self esteem and confidence. Retiring will fulfill that need to feel normal and having equal rights and being just like everyone else.
. John will be able to learn new skills because he has more time and he has a 1:1 worker during the day. He is interested in fishing, so he would be able to go to fishing shops, try fly fishing or go to the pier where he can have a go. It is possible that he could go fishing on a charter boat (if one could be found that could anchor a wheelchair safely in place) where he would get some professional coaching.
. John will be available to meet more people in his local community because he will be based at home instead of college during the day
. John might want to travel to visit his Mother. Once he is retired he could take a mini break, maybe go on the train and stay overnight returning home the next day. Organising accommodation and a carer is possible.
. John can choose the people he wants to spend time with. He has already been to visit a friend on one of his retired days. John can choose to spend time with people he enjoys rather than a group where he may not like everyone.
Disadvantages
. Loss of routine, John would have been doing the same thing week in and week out for a long time and now this is about to change. This can cause feelings of loss of purpose and significance, John is choosing the right option of retiring on only two days per week, he can get used to retiring and not lose his connections while he is doing it.
. John will have to learn new ways of having relationships. Previously his friendships have centred around the institution and Community College. New community based relationships would not have that commonality and John would have to make friends from a different perspective, like retired status or common interests. This could be stressful, he would need close support so that his renewed confidence and self esteem do not become deflated.
. John will not have as much social contact as he does at the community college. For someone who is already marginalised socially this could be devastating. He will come into contact with fewer people in his week than before. He could become more isolated and lonely as a result.
. Funding, John's placement at the Community College day service would have been government funded, if he leaves there his funding for day service will stop. Does John have the money to self fund the activities that he would like to access? Is his package able to supply the staff hours required? Would it be better to lobby the Community College to modify their programs to accommodate ageing persons, surely John is not the only one at retirement age.
. John might find that he is moved to a nursing home due to lack of funds to support him at home during his retirement. This is a very likely scenario. The lack of funding does drive many decisions. Usually if people with intellectual disabilities are moved to a nursing home they will be significantly younger than the people without intellectual disabilities. Mainstream nursing homes operate differently to disability support residences and they are usually not as responsive to the needs of their service users. John would find his support levels drop dramatically.
. Are community based retiree programs like senior citizens and local bowls clubs really the right setting for ageing people with disabilities? Many retiree's are more active in their retirement than they were when they had jobs, they are taking bus tours, walking 18 holes, line dancing and bushwalking on a full weekly schedule. It could still be too much for John.
5) If John does retire, what sort of lifestyle might he adopt?
In a perfect world, John might adopt a more relaxed lifestyle if he does retire, with greater 1:1 support, in a quieter environment, with more flexibility around the time of day dictates, and with a support network that has been trained in the support of people who are ageing with an intellectual disability. John could source work for himself rather than working at a supported workplace and therefore do something that has meaning for him. John could develop more social skills in a retired lifestyle because he will not be communicating primarily with people who are part of the disability industry. He will need to develop different social skills than the ones he currently uses.
I am concerned that John is more likely to adopt a lifestyle that is less vibrant and dynamic if he chooses to retire now. John has the support of a 1:1 staff member, and while it is early days yet, there does not seem to be any planning or support to help fill his retired days with purposeful and meaningful activities. John has been to visit a friend, gone shopping and he has been for a walk. These are more like weekend leisure activities that are likely to lead to John eating too much of the wrong kind of food and feeling depressed and angry if they are repeated over and over. John and his support staff are investigating opportunities to go fishing. I hope that this means that his support staff have begun doing some planning and John will have some purpose and direction in has days soon.
It is important that John does not adopt a more sedentary lifestyle if he chooses to retire. He needs to keep moving and stay as fit and as healthy as possible so that he has maximum enjoyment of his retirement. Australians have a very healthy track record for ageing. Men enjoy on average 69.6 years without reduced functioning due to ill health which is the 6th highest in the world. For John to have a successful retirement in term of health, he would need to be vigilant about the risk factors that can have a profound impact on his health and his ability to age in place. John can practice prevention to lower his risk of experiencing the diseases that are most often found in our ageing population. He can modify his risk by being a non-smoker, who does not misuse alcohol, who has a good diet, is not overweight or obese, and does not experience chronic stress.
6) What obstacles might be encountered to John ageing in place?
Health related obstacles:
Physiological changes that occur as a result of ageing may affect Johns ability to "Age in Place" due to the need for a higher level of medical care. While some supported residential units are considered "High Care" their care does not generally extend into the medical side of a persons care needs. Most likely to have effect on John's residential situation are:
. Impaired function of the cardiovascular system is associated with decreased activity levels and weight gain which is common for individuals who are reliant on wheelchairs for mobility. This results in reduced blood flow which can cause atrophy of the heart muscle, calcification of heart valves, deposits in and loss of elasticity in the arteries, reduced strength, slower rate of healing, higher blood pressure and risk of stroke. These conditions could require confinement to bed and full nursing care which means that John would not be able to age in place.
. Respiratory problems are common in later years. The respiratory system loses efficiency and the tissue becomes less elastic with reduced cilia activity which causes reduced oxygen uptake. This worsens if the person is a smoker or lives in a polluted environment. Chronic obstructive pulmonary disease (COPD) affects the lungs, the 2 most common ones being emphysema and chronic bronchitis are when the airways and lungs are damaged and clogged with phlegm and unable to work efficiently. Pneumonia, collapsed lung, heart problems caused by the overexertion of the heart to pump blood through the lungs and reduced oxygen supply to the brain are complications of COPD. Any of these conditions would cause John to be admitted to hospital where he would receive full nursing care, he would be likely to require service of a nursing home which means that John would not be able to age in place.
. Musculature Changes caused by a general withering of the muscles. Changes in musculature could result in falls causing fractures and head injuries or fear of falls causing anxiety and reduced activity levels. Some life threatening consequences of reduced musculature are, Reduced ability to breathe, reduced stomach and bowel activity causing constipation, bladder incontinence. Maintaining regular physical activity is the key to retaining muscle mass. For people who rely on wheelchairs for mobility, the ability to achieve regular exercise is impacted by already strained muscles and bones and overworked joints as a result of propelling their wheelchairs. Full nursing care and then some time in rehabilitation would be required for an ageing person who has experienced the consequences of a fall such as surgery for a joint replacement.
Sensory changes that could be likely to be considered obstacles in John's situation and affect his ability to age in place are:
. Vision and hearing changes, the house may not be suited for a person with stages of deafness or blindness, this could affect his ability to remain at the house.
Cognitive changes occur as we age, from age 18 our brains begin to shrink as we lose cells. This can cause a decreased ability to quickly learn and recall information, it also has an effect on the memory. Cognitive illnesses with a progressive decline are more frequent in the ageing population.
. Dementia, caused by Alzheimers disease, Parkinsons disease and Huntingtons disease can include symptoms such as memory loss, confusion, personality changes, apathy and withdrawal from everyday life. Severe dementia symptoms include, showing no recognition of everyday relationships, failure to recognise everyday objects, sleep disturbance, restless searching, aggressive behaviour, uncontrolled movements, in the final stages the person will be bedridden. Not everybody who is ageing will get dementia, but this would be a significant obstacle to John ageing in place if he developed any of these diseases.
Other obstacles:
. Reduction of Services. The access to specialist disability services are likely to be reduced and restricted as John ages. This could affect how suitable his current residential service is to cope with the changes in John's health and well being as he ages successfully.
. Advocacy. Older people with intellectual disabilities less likely to have strong advocates and robust informal networks than their younger counterparts. John currently seems to be advocating for himself but in the case that John has poor health or staff changes occur (high probability of staff changes), Johns support network and self determination skills may be impaired.
(source: Robert Phillips, Older residents and the Law, Accommodation, Care and Legal Rights in Victoria.)
. Funding. John could need the services of Home and Community Care or a Domicillary Nurse while he is ageing in place. But because he is already funded to receive all his personal care via the accommodation services this is seen as double dipping and John could be refused the additional service.
. Lack of resources. As John ages, his care and support needs will change. Staff may lack the knowledge and understanding of John's changing health, his personal care and support needs as he ages. John does not have a Case Manager who would take responsibility for his coordinated healthcare and well being. The accommodation service is not professionally equipped or have the appropriate finances to provide the complex tasks ageing in place will require, such as access to appropriate health assessment services and planning to best meet John's needs.
http://southernflyfishers.org.au/
http://www.betterhealth.vic.gov.au/bhcv2/bhcarticles.nsf/pages/Lung_conditions_obstructive_pulmonary_disease?open
http://www.betterhealth.vic.gov.au/bhcv2/bhcarticles.nsf/pages/Dementia_through_all_its_stages?open
http://www.aginginplace.org/traits/physiology/
Robert Phillips, Older residents and the Law, Accommodation, Care and Legal Rights in Victoria.
Christine Bigby: Ageing with a lifelong Disability
No comments:
Post a Comment