a John s Health Action

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1 Essentil lifestyle plnning You might lso like to red the following: John s Helth Action Plnning our qulity of life everydy is determined by the presence or bsence of things tht re importnt to us our choices, our routines. Michel Smull The beginning of essentil lifestyle plnning Essentil lifestyle plnning begn in the lte 1980s, t the University of Mrylnd, where Michel Smull nd Susn Burke-Hrrison were sked to help people return to their home communities from institutions nd residentil schools. All of the people tht we were sked to help return to their communities hd been lbelled s not redy for life in the community nd their records supported this impression. Esclting interventions hd not been effective. For mny there ws cycle of plcement nd filure, nd current referrls for community services hd resulted in thnks but no thnks response. The written description of wht we lerned with ech individul ws clled n essentil lifestyle pln. Wht we hve found is tht developing n essentil lifestyle pln is useful for nyone where it is helpful to: Discover wht is importnt to person in everydy life; nd wht is importnt for person in order for them to sty helthy nd sfe Describe wht you hve lerned in wy tht is esily ccessible to those who will help the person get wht is importnt to them. Throughout the 1990s the use of essentil lifestyle plnning ws extended to other people - to individuls living t home, to those using community services, to children nd to older dults. Essentil lifestyle plnning is guided process for lerning how someone wnts to live nd developing pln to help mke it hppen. An essentil lifestyle pln is useful for nyone where is it is helpful to: Discover wht is importnt to person in everydy life: nd Identify wht support the person requires nd ny issues of helth or sfety (from the perspective of the person) Describe wht you hve lerned in wy tht is esily understood by those who will enble the person to get wht is importnt to them

2 Essentil lifestyle plnning is flexible process tht cn be used in combintion with other person centred plnning techniques. Fundmentlly, n essentil lifestyle pln identifies nd seprtes wht is importnt to someone, from wht others see s importnt for them. Good plns reflect both the perceptions of the person themselves nd those who know re cre bout her or him. Developing plns tht relly reflect how people wnt to live requires the perspectives of those who know nd love the person: listening to wht they like nd dmire bout the person; nd their stories nd good dys nd bd. Lerning how people wnt to live is just the beginning, pln provides the frmework of our on-going lerning. This chpter provides n overview of essentil lifestyle plnning, nd describes wht pln looks like, nd the bsic plnning process. This chpter covers: Developing n essentil lifestyle pln The structure of essentil lifestyle plns - the dministrtive section: the persons section; the support section; nd the ction section Fundmentlly the pln is developed by spending time nd listening to the person nd others who know nd cre bout them. Developing n essentil lifestyle pln Essentil lifestyle plnning is used by self-dvoctes, fmilies, friends nd pid support stff. Self-dvoctes who hve the energy nd drive to pln themselves often use Listen to me, Or Thoughts bout my Life to begin to develop their own essentil lifestyle pln. This is booklet tht people complete, tking them through the process of developing pln. Click here to see Listen to Me Some people prefer to entrust plnning to fmily member or friend, or need them to pln on their behlf. There re trining courses nd mnul for fmilies to lern to pln with their dughter or son. The mnul is written specilly for fmilies lerning to do person centred plnning clled, Fmilies Leding Plnning. Click here to see Fmilies Leding Plnning If the person does not hve the stmin to orgnise the process themselves, nd hs no one in her personl network tht cn tke this on, she will hve to rely on member of stff. This hndbook is written for stff who re developing essentil lifestyle plns for people who use services. Whether the plnning is led by self-dvocte, fmily member or pid stff, the development of n essentil lifestyle pln hs 5 simple stges:

3 Think bout wht you wnt to lern nd how to lern it Gther the informtion Develop nd review first pln Put wht hs been lerned into prctice On-going lerning Fundmentlly, the pln is developed by spending time with, nd listening to the person nd others who know nd cre bout them. These re vriety of wys to begin n essentil lifestyle pln. Whichever wy you begin to pln, ll essentil lifestyle plns hve common structure of four sections.

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5 The structure of n essentil lifestyle plns An essentil lifestyle pln hs 4 bsic sections the dministrtive section, the person s section, the support section nd the ction pln. The dministrtive section contins bsic informtion bout who the pln belongs to, who ws involved in producing it. The person s section contins n introduction to the person ( good things bout me, lso known s the positive reputtion ) nd three prioritised lists of wht the person sees s importnt to them. The support section describes wht support the person requires, nd wht people who know nd love the person believe re importnt for the person to be helthy nd sfe. The ction section reflects the discrepncy between wht is described in the pln nd wht is hppening in the persons life t the moment where something is importnt to the person nd is not present in her life, n ction is set to chnge this. Ech section hs purpose nd some guidelines bout wht goes in them nd how they re orgnised. The dministrtive section In the dministrtive section the reder should lern: whose pln it is; when it ws done; who contributed; nd nything else tht is required. This is lso where you my lso tell the reder why the pln ws done/wht you wnt to lern. The person s section The person s section begins with n introduction to the person (positive reputtion, wht people like nd dmire bout the person) nd then tells the reder wht is importnt to the person. These re usully prioritised into three lists: wht is most importnt, 2nd in importnce nd 3rd in importnce to the person. 1) Wht people like nd dmire bout the person, (positive reputtion) This section should list wht other people like nd dmire bout the person. It should list things wht we might like or dmire bout nyone of roughly the sme ge. It should not include things tht we only sy bout people with disbilities or is fint prise. Clinicl descriptions such s `expresses nger ppropritely` or `cn et independently` re not cceptble. Exmples Sue hs n incredible memory Brin hs n infectious lugh nd gret sense of humour Bill is gret thinker Nz is good listener

6 Andy is very ptient 2) Who nd wht is importnt to the person These 3 sections describe wht the person perceives s being importnt to him or her. These re most importnt, 2nd in importnce nd 3rd in importnce. Some people cll them Essentils, Importnt nd Enjoys/prefers. While the hedings for wht is importnt should be cler nd unmbiguous, the words used for the hedings re not s importnt s creful lerning nd powerful presenttion. It must not include items tht others think should be importnt to the person. It should only include those things tht the person tells us re importnt (with words or behviour). For exmple, the first drft of pln done with 5 yer old with severe disbilities sid I must hve my food pureed. As we looked t tht we relised tht wht she told us with her behviour ws tht she hted to choke or cough when eting. However, it is very importnt to her helth tht her food be pureed. So hving her food pureed ws listed under wht we need to know or do for her to sty helthy in the support section, nd wht ws listed under most importnt to her ws tht she not choke or cough while eting. Developing nd presenting wht is importnt to the person should reflect creful lerning tht is rooted in listening to the person (their stories nd their behviour) nd in listening to those people who know the person nd cre bout the person. Lerning includes spending time with the person, it does not include using forms, questionnires, or sking list of prepred questions. This section reflects wht is importnt to the person, not wht is importnt to others, or wht people think should be importnt to the person. It will generlly reflect wht is importnt in reltionships with others nd their interctions: To live with Andy, Ellie, Lur nd Kte I must not be supported by people who re overbering, loud ggressive nd in my fce People must tke time to listen to me when I tlk to them nd not rgue with me or ng. I my sk for your opinion if I don t, then don t offer it. Tht people re punctul nd let me know if they re going to be lte To spek to my sister Boo nd Clre every week on the phone Spek to Niki once month on the phone nd see her three or four times yer for weekend People must not nswer questions for me s I cn mke my own decisions

7 in things to do, things to hve: I must hve wtch tht works I must hve strong chir s I sit down hevily! To wtch ll episodes of Corontions Street nd Estenders (including the omnibus) To keep the study resonbly tidy - so tht I know where everything is, even if they re in piles rther thn files eting out every other week (Indin, or t The Nose or The Led Sttion) nd pizz from Pizz Express every month I must be ble to wtch footbll on TV whenever possible, especilly when Mnchester United re plying in rhythm or pce of life: not to get up s soon s she hs st down not to be rushed in nything Getting up t my own pce bout two hours before I need to leve for work, nd hving cmomile herbl te whilst still in my dressing gown Not to hve every weekend booked up in positive rituls or routines: Someone I trust being there for me to tlk to for bout hlf n hour when I come bck from the dy centre To hve t lest one cup of coffee (with milk nd two sweeteners) s soon s I m up in the morning, before getting dressed. To lwys sit in the front set of the cr Hving bth every other dy, t night Stying up lte nd wtching TV until I drop off t the weekend I must hve sleep fter my dinner in my room

8 This informtion is prioritised under the following hedings: ) Most Importnt These re the most importnt things tht people must hve present or bsent in their lives for resonble qulity of life. They my be described s wht the person must hve nd must not hve in their life; otherwise the person would become very unhppy, withdrwn or chllenging. b) Second in importnce These re still importnt to the person, but not s criticl s the most importnt section. If person is denied something tht is second in importnce, then their life would still be tolerble but perhps only for certin length of time. When people hve number of the things tht re importnt to them ignored then this will severely compromise their qulity of life. c) Third in importnce These re things tht re still importnt to the person, but did not mke the first two sections. The support section In the support section the reder lerns wht others need to know or do: so tht the person hs wht is importnt to him or her; nd will sty helthy nd sfe. This section my lso include section on the chrcteristics tht people who support me. For mny people, this is where the blnce between hppy nd sfe/helthy is described. The generl rules for support re given with enough specific exmples to eliminte mbiguity. This section describes wht is importnt for the person to sty helthy nd sfe. The to be successful in supporting section does not include things tht the person cn do for themselves. There re numerous optionl prts of this section tht re used s needed. The ones most commonly used describe how the person communictes nd wht we need to do to help the person sty helthy nd sfe. The pln must ddress ny importnt helth issues tht we need to know or do something bout. Any pln tht does not ddress significnt issues of helth is not cceptble. One of the errors tht fcilittors mke is to get so cught up in the positive spects of the plnning tht they do not ddress issues of helth, especilly if they, or the person, re uncomfortble with the prticulr issues. The chllenge is to look t helth through the eyes of the person s well s through the perceptions of the disbility system nd find blnce tht works for both. Where there re

9 issues of helth tht re sensitive nd/or very personl there needs to be judgement bout who needs to know the informtion nd with wht detil. A good pln my let the reder know tht there is section on helth cre tht is only vilble to people who need to know the informtion. Where the person is sensitive bout n issue tht needs to be widely know, such s seizure disorder not fully controlled by mediction, those developing the pln must work out with the person the most respectful wy of shring the informtion. (Those evluting plns review ll sections, including those seen s privte or sensitive, but should do so with knowledge nd the permission of the person, wherever possible). Keep in mind tht vitl issues of helth (or sfety) my not be importnt to the person. Where this is the cse they should not be noted under the hedings for wht is importnt to the person but must be ccounted for either under this heding or under the heding wht we need to know or do to support the person. Exmples: Lucy will vote with her feet very often s this is the esiest wy for her to express her dislike of sitution is to leve. She must lwys hve the chnce to leve room, return home or get some extr spce so she does not feel trpped. Alwys cknowledge wht Peter is sying or doing. NEVER ignore him. Duncn will often tke wht you sy literlly nd my find metphors, srcsm or jokes hrd to understnd. Mke sure tht Michel lwys knows in dvnce where he is going, how, when nd how long for nd wht he will need to tke with him Understnd tht I mnge my time well, but it hs nturl peks nd troughs of productivity. I must know tht I m trusted to complete my work. Don`t sk me to do nything without giving me dedline Remind Kren to tke her tblets if she is bout to et Tommy ets his lunch on sty wrm plte, with grey bite reflex spoon 1) Communiction sections Where the person does not use words to tlk communiction section is n importnt spect of this prt of the pln. The communiction section is designed to support people who do not use words to tlk, or who hve difficulty in communicting with words. It is lso useful for people who do use words to tlk but re difficult to understnd s well s wy of

10 recording how we communicte with people who hve difficulty in understnding wht we sy. There re often two sections to the communiction pln. The first is how we think the person is communicting with us. The second is how we re trying to communicte with the person, for exmple, where tem is using ugmenttive communiction strtegies such s object cues etc. There is n exmple in Mrtins pln click here to see it. (pge 12) 2) Routines For people who require extensive physicl ssistnce it is not unusul to hve these routines detiled under their own hedings (e.g. morning routine, rriving home routine, going to bed routine) with the informtion only vilble to those who ctully provide, pln for, or oversee the support. There is n exmple in Mrtins pln click here to see it. (pge 13) The Action section 1) Issues to work out (unresolved issues) This is running list of things to work out nd questions to be nswered. They my include issues tht people hve very different views on; where there is not enough informtion; or other people who you need to tlk to. These re recorded nd ddressed t the essentil lifestyle plnning meeting. 2) Action pln The ction pln describes who is going to do wht to help people move towrd the life tht they wnt nd sty helthy nd sfe. It often describes wht needs to be mintined s well s wht will be chnged. It is developed from compring the person s life now to wht is importnt to them. From this we identify wht does nd doesn t mke sense in the person s life, nd set ctions to chnge wht does not mke sense nd mintin wht does mke sense. This is usully completed t the essentil lifestyle plnning meeting. Conclusion Where creful plnning nd implementtion hve been done we hve lerned tht: When we listen with skill nd respect, we cn lern wht is importnt to ech person regrdless of severity of disbility; Plnning is continuous effort, wht people wnt tomorrow is different from wht they wnt tody;

11 Growth nd lerning occur nturlly when people hve the opportunities tht they wnt, tht re in keeping with wht is importnt in their life; Mny of the behviours tht we hve lbelled s non-complince, s chllenging, or s problem behviours, go wy when wht is importnt to people is present; Regrdless of severity of disbility, people re ble to tke positive control over their lives s we lern to listen nd trust develops; nd building network of reltionships in the community occurs, but it usully tkes yers not months. We hve lso lerned tht while wht is most importnt to people is modest, implementtion is ffordble only if we chnge the wy we work. Unless we begin to fund individuls rther thn houses, we cnnot fford to implement plns where people re sking to chnge who they live with or wht they do. We hve lerned tht it is our own structures tht re the brriers nd tht much of the reports of high costs reflect the rigidity of our responses. Person centred plnning therefore provides n opportunity to listen to people, lern wht is importnt in their lives nd ct upon this. This cn result in trnsformtion in people s lives, in services nd in communities.