A R e v i e w A u g m e n t a t iv e a n d A l t e r n a t iv e C o m m u n i c a t i o n In t e r v e n t i o n : A L i f e s p a n I s s u e A B S T R A C T : The purpose o f this article is to reflect on the needs o f p e o ­ p le with little or no functional speech and the difficulties they experience throughout their lives. The mismatch between the needs o f Augm entative and Alternative Communication (AAC) users and intervention provided is explored by firstly addressing the need f o r A A C users to become an integral p a rt o f the intervention team and in this way to professionalise consumer input. Secondly, the need f o r a more collaborative approach to team work is highlighted to ensure more effective problem -solving o f lifespan issues. Finally some b rie f comments are made about the role o f the physiotherapist as pa rt o f the AA C intervention team. KEYW ORDS : AUGM ENTATIVE A N D ALTERNATIVE COM M UNICATION (AAC), A A C USER PERSPECTIVES, LITTLE OR NO FUNCTIONAL SPEECH, COLLABORATIVE TEAMWORK, LIFESPAN INTERVENTIO N ALANT E, D. Phil (UP)' C e n tre for Augmentative and Alternative Communication, University of Pretoria INTRODUCTION In the past there has been increasing awareness o f the im portance o f com m u­ nication for daily living. Consequently, there has been a growing realisation of the lim itations and restrictions of ser- vice-delivery m odels in addressing the needs of individuals - and in particular the needs of those who have very little or no functional speech. This realisation has to a large extent contributed to the fast development o f the field of Augm en­ tative and Alternative Communication (AAC) over the last 30 years. AAC refers to the use of different m odes of com m unication in order to supplement or extend an individual’s verbal com m u­ nication, thereby enabling him to convey messages more effectively. AAC strate­ gies could include the use of aided sys­ tems (e.g. the use of comm unication boards and technology) as well as un­ aided systems (e.g. the use o f gestural systems and vocalisations). These stra­ tegies are thus intended to facilitate com m unication by extending the range and quality o f the messages. The anxiety that the inability to com ­ municate creates for people who have very little or no speech, has however been ill understood as professionals tended to focus on current needs and requirem ents without a lifespan orienta­ tion towards intervention. This means that individuals with severe disabilities are relatively well catered for as long as they attended school, but once they leave school, they are left on their own w ith­ out any infrastructure for support except th eir im m ediate fam ily. A lifesp an approach to planning and intervention focuses on the facilitation of activities of d aily living (A D L) as w ell as the encouragem ent of individuals and their families to develop resources and coping m echanism s for the future. T his approach therefore em phasises aspects such as: • F u n ctio n al living and the m o d ifi­ cation o f current skills to address future needs • Em pow erm ent of the individual and the fam ily to cope w ith difficulties on an ongoing basis by, for example, teaching skills in problem solving, net­ working, and how to access resources in the com m unity • Involvement of the person with dis­ ability and the fam ily as vital role players in the decision-m aking and intervention processes The significant im pact of the lack of focus on lifespan issues in intervention can be seen by the difficulties adults with disabilities experience in coping in the community. This situation is em pha­ sised by Richard Fosler (1998:7) who described his anxiety in facing his dete­ riorating physical condition, w ithout a secure support system “ M y greatest fear about m y deteriorating health was being trapped in my body with no way to comm unicate.” The present paper intends to explore a source of inform ation that has always been neglected - listening to AAC users and their stories to guide the direction of interventions. Secondly, this paper addresses the im portance o f a lifespan approach to intervention and em phasises the role o f teamwork. Finally som e com ­ ments are m ade about the role of the physiotherapist in AAC im plem entation. AAC USER PERSPECTIVES The need to involve AAC users more d irectly as part of the in terv en tio n process has been identified by various experts in the field of AAC. A lthough some studies have been attem pted to describe AAC intervention from the per­ spective of the user, m ost o f these seem CO RRESPONDENCE: E m a Alant Centre for Augm entative and Alternative C om m unication University of Pretoria 0002 Tel: (012) 420-2035 (w) (0 1 2 )4 6 -4 5 0 0 (h) E-m ail: ealant@ postino.up.ac.za SA Jo u r n a l o f Ph y s io t h e r a p y 2000 V o l 56 No 1 25 R ep ro du ce d by S ab in et G at ew ay u nd er li ce nc e gr an te d by th e P ub lis he r (d at ed 2 01 3. ) mailto:ealant@postino.up.ac.za lim ited in providing clear perspectives. McCall, Markova, Murphy, M oodie & C ollins (1997) identified a shortage o f system atic evidence concerning the im pact o f com m unication devices on the quality o f com m unication o f the individual in daily life. They identified a void in the knowledge o f the percep­ tions of AAC users particularly in rela­ tion to th e im p act of technological advances. Studies conducted to inves­ tigate the perspective o f the AAC users have often been lim ited to the descrip­ tion o f AAC users’ particular p refer­ ences in relation to devices e.g., the case study co n d u cted by Soto, B elfiore, Schlosser and H aynes (1993) in which the individual was asked to express his preference in relation to an electronic system or a low technology com m unica­ tion board with an identical overlay. H uer and L loyd (1990) produced a sum ­ mary o f 165 AAC users’ perspectives gleaned from articles published between 1982-1987. From this analysis com m on themes emerged e.g. feelings o f frustra­ tion, attitudes towards professionals and issues concerning com m unication part­ ners. Users often com m ented on profes­ sionals’ insensitivity to the suggestions o f AAC users. Their contributions were often regarded as less im portant due to the strong em phasis on professional input and values during the rehabilita­ tion process. To further enrich our understanding of the perspectives o f AAC users, the life stories of three AAC users were analysed in order to identify com m on themes that could guide intervention. The three individuals were Richard Fosler, a banker (Fosler, 1998); Jim R enuk a lecturer (Renuk, 1998); Lake Kissick, a w riter (1984). T he follow ing com m on themes em erged from their autobiographical descriptions: • A late start to com m unication in their lives; difficulties with physical p ro ­ blem s and / frustration w ith inade­ quate com m unication systems • An intense struggle to com m unicate • The key role o f parents in solving genera] problem s and m ore specifi­ cally those related to com m unication • The im portant role o f technology in their lives • The long wait for access to a com ­ puter • T he difficulties in acquiring literacy skills • The difficulties w ith technology and requirem ents (knowledge and skills) to keep up with changes • The anxiety when having to cope on their own after having been dependent From the above it is clear that most o f their frustrations revolved around pre­ dictable issues namely, access to com ­ m unicatio n and literacy skills, d e­ pendency on technology, dependency on family and caregivers and lack o f inde­ pendence. Although one could argue that all people have to cope with change throughout their lives, accom m odating change is m uch m ore difficult for p eo ­ ple with severe disabilities due to their d ependence on others. In fact, this implies that intervention needs to be orientated toward dynam ic changes in the life o f the individual, rather than focusing only on the current needs o f the individual. This kind o f intervention would aim at advancing the concept of prom oting the developm ent o f the skills for self-advocacy in preparation for the day when a student faces a learning difficulty w ithout the safety net o f spe­ cial education programs. O ne needs to see each person with little or no func­ tional speech as a lifelong learner and develop a lifespan approach to problem solving that not only provides an im m e­ diate service, but also supports the long­ term goals of self-advocacy for learners w ith little or no functio n al speech. Intervention then becom es focused on the concept o f im plem en tatio n for change, thus preparing the individual and the family for the transitions that need to be m ade throughout life. The question arises as to what a lifespan orientation towards intervention would entail? This kind o f approach to inter­ vention would im ply focusing on the im provem ents or deterioration in abili­ ties o f the individuals, im provem ents or changes in technology relevant to the person as well as tem porary or perm a­ nent contextual changes that m ight take place in the perso n ’s environm ent, for e.g. m oving from the parents’ hom e into a group home. In addition, it is also im portant to consider the different rates o f change that can occur as deterioration accelerates or retards as well as the changes that could occur in the partners over time, for example, the im pact of age on p aren ts’ ability to support a young adult w ith severe disabilities. IMPLICATIONS FOR INTERVENTION T he challenge, therefore, is how to plan intervention to ensure that it becom es m ore lifespan orientated and thus pro­ vides the individual with severe disabi­ lities w ith the skills to cope w ith changes. A lifespan approach needs to be team driven to ensure system atic and goal d irected intervention. This entails the inclusion o f the family m em ­ bers and the AAC users them selves as m ajor decision-m akers in the process. A lthough the principle has been accepted in theory, the practical application o f including the AAC users and their fam i­ lies as full m em bers of the intervention team has been less successful. A lthough the reasons for this lack o f success could be most complicated, Geb Verburg (1995), an AAC user, has som e ideas on how this process can be facilitated. He poses the following question “ How can we expect to treat people as invalids, as lesser beings, to ignore them or to bare­ ly listen to them when they are in our “care” and expect them to do the right things the m inute they step out o f our hospital (rehab centre, etc)?” He m aintains that m uch m ore pow er needs to be given to the consum er as the field o f disability is rem oved from health care into the jurisdiction o f social justice. A ccording to him three issues are central namely, the dilem m a o f pow er in the helper/helpee relationship, attitudes or kindness and help, and lastly the pro- fessionalisation of consum er input. A lth o u g h m uch has been w ritten about the doctor/patient or helper/helpee relationship, it is clear that relevance and appropriacy o f intervention to a large extent depends on the mutual under­ standing betw een professional and client during intervention. A persistent im ba­ lance o f pow er betw een the provider and the receiver o f the service largely con­ tributes to the counter-productive atti­ tudes, w hich prevail so often during the process of intervention. Clients should 26 SA Jo u r n a l o f Ph y s io t h e r a p y 2000 V o l 56 No 1 R ep ro du ce d by S ab in et G at ew ay u nd er li ce nc e gr an te d by th e P ub lis he r (d at ed 2 01 3. ) be encouraged to make decisions about their own intervention and health and in this way they need to be encouraged to take responsibility for their own life. “If we really want people to take respon­ sibility for their own body, their own health, their own lifestyle then surely we m ust not treat them as if they are less competent, less responsible, ignorant, and unable to make decisions regarding their own life” (Verburg, 1995). A second issue identified by Verburg relates to the belief that subjects o f ser­ vices, for example people with disabi­ lities, are being done a favour. Helping has the connotation o f “doing good” and w hilst this might be true, the expec­ tation is that the subject o f this process needs to be grateful and is certainly not expected to “hate the people who did the “good”” (Verburg, 1995). He explains that the professionals them selves get m uch rew ard from this relationship as they d o n ’t only benefit financially, but also socially as they are seen to be pro­ viding services to sufferers. He em pha­ sises the need to do away with the helping, do away with the patient and let health care and rehabilitation becom e a service provided to paying customers by professionals. People with disabili­ ties need to be the principle decision­ makers in their own health and lifestyle decisions and exercise these abilities in the relative “safety” or supportive envi­ ronm ent o f the rehabilitation centre or hospital in preparation for independence. The third issue identified by Verburg relates to the p ro fessio n alisatio n o f consum er input. He em phasises that although there has been a rise in the philosophy o f consum er involvem ent internationally, there is lim ited evidence that consum ers are directly involved in the process o f evolving this participa­ tion. He explains that the creation o f a small group o f consumers and profes­ sionals who are involved in research and developm ent o f products greatly m is­ guide the role and function o f consum er input." By asserting that the process of ex tractin g “valid d ata” from focus groups is a very com plex process that must be carried out by professionals, this approach re-inserts the professionals back into a segment o f the decision­ m aking chain w here the consum er ought to be directly in charge o f the input and feedback. The process of development and m ore so the process o f device prescription is already too professional- controlled” (Verburg, 1995). CONCLUSION The im plications o f Verburg’s discussion for the intervention process are multiple, but perhaps the m ost important relates to the collaborative nature o f intervention and the need for the person w ith severe disabilities to take ownership o f the process. The notion o f collaborative consultation can be described as “an interactive process that enables people with diverse expertise to generate cre­ ative solutions to m utually defined prob­ lems. The outcom e is enhanced, altered and produces solutions that are different from those that the individual team m embers would produce independently” (Coufal, 1993). To be involved in a col­ laborative p ro cess requires specific skills to ensure a context conge­ nial to include not only professionals, but also AAC users and their fam ilies as an inherent part o f the process. These skills could include: • Identification o f fam ily’s interaction patterns and their perspectives as well as those o f the AAC user in term s of coping with disability. • A pplication o f different strategies in w hich these perspectives can be inte­ grated to ensure the AAC user and fam ily’s inclusion as vital m embers o f the rehabilitation team. • F lex ib ility in integ ratin g p hysical rehabilitation within the framework of transition and future planning. • M ore focused attention and training to facilitate the AAC user and fam ily’s ability to gain access to community resources to facilitate physical coping in integrated com m unity settings. • Use of strategies to facilitate transdis- ciplinary team work between members of the rehabilitation team. How successful are we in training pro­ fessionals to becom e sensitive team players with our clients? For example, what clinical com petencies do we expect from speech, occupational and physio­ therapy students that could facilitate the developm ent o f these skills? Simuzingili and A m osun (1998:11) described the com petencies expected from physiother­ apy students at the University o f the W estern Cape. A lthough impressive and relevant, it is not clear w here in this list the skills related to team building would be included. This com m ent could proba­ bly be extended to most professional train in g p ro g ram m es as w e build p h ilo so p h ies around the p ro cess o f teamwork. The profession o f physiotherapy has a significant role to play in the interven­ tion o f people with little or no functional speech as a significant percentage of these clients are physically severely challenged. AAC users m entioned in this article focused on their frustrations as they had to not only wait to get access to com m unication devices and systems but also had to contend with the reality that they had been poorly prepared to function independently in society. To becom e m ore effective in intervention requires not only dedicated teamwork, but also the inclusion o f all relevant p ro fessio n als as part o f this team . Physiotherapists need to be orientated tow ards integrated reh ab ilitatio n to facilitate function in the community. Strategies aim ed at facilitating the devel­ opm ent o f lifeskills, com m unication and transitional issues need to be em pha­ sised. In th e field o f AAC in particular, physiotherapists need to play a m ore rigorous role in facilitating inde­ pendent living by identifying ways in w hich phy sical difficulties can be accom m odated or integrated in daily life activities. Besides utilising their specific skills, such as facilitating functional positioning and purposeful movements, which will give the AAC user access to his com m unication systems, physiothe­ rapists should have a know ledge and skills to interact using these systems. Internationally, as well as in South Africa, physiotherapists have been slow to becom e involved in the field o f AAC. It is clear, for the field o f AAC to de­ velop, we need m ore involvement from physiotherapists. Only by providing the AAC user w ith enough support and guidance to becom e functionally inde­ pendent can we really m ove towards m eaningful service. SA J o u r n a l o f Physiotherapy 2 0 0 0 V o l 56 No 1 27 R ep ro du ce d by S ab in et G at ew ay u nd er li ce nc e gr an te d by th e P ub lis he r (d at ed 2 01 3. ) REFERENCES C o u fa l, K. 1 9 9 3 . C o lla b o ra tiv e c o n su lta tio n fo r s p e e c h -la n g u a g e th e r a p ists. T o p ic s in L a n g u a g e D iso r d e rs, 14(1): 1-14 F o s le r R H . 1 9 9 8 . L o o k in g fo r th e right co m m u n ic a tio n d e v ic e . C o m m u n ica tio n O ut­ lo o k , 18(2 /3 ): 6 -8 . H uer M B , L lo y d LL . 1 9 9 0 . A A C u se r s’ per­ sp e c tiv e s o n a u g m e n ta tiv e and altern ative c o m m u n ic a tio n . A u g m e n ta tiv e and A lte r ­ n ative co m m u n ic a tio n , 6 : 2 4 2 -2 4 9 . K is s ic k L N . 1984. C o m m u n ica tio n d e v ic e s and an en rich ed life . T h e e x c e p tio n a l parent, June: 9 -1 4 . M c C a ll F, M arkova I, M urphy j, M o o d ie E, C o llin s S. 1 9 9 7 . P er sp e c tiv e s o n A A C sy ste m s b y the users and b y their c o m m u n ica tio n partners. E uropean Journal o f D iso r d e rs o f C o m m u n ica tio n , 32: 2 3 5 -2 5 6 . R en u k J. 1 9 9 8 . S earch in g. C o m m u n ica tio n O u tlo o k , 1 8 (2 /3 ): 9 -1 0 . S im u z in g ili T, A m o su n S A . 1 9 9 8 . W hat c li­ n ical c o m p e te n c ie s d o w e e x p e c t from p h y sio ­ therapy stu d en ts at the U n iv e r sity o f the W estern C ap e? S A Journal o f P hysiotherapy, 5 4 (4 ): 1 0 -1 4 . S o to G , B e lfio r e PJ, S c h lo ss e r R , H a y n e s C. (1 9 9 3 ). Teaching sp ecific requests. Education and training in m en ta l retardation, 2 8 :1 6 9 -1 7 8 . Verburg G . 1 9 9 5 . W o u ld n ’t it b e n ic e i f . . . . C o m m u n ic a tin g T ogether, 1 2 (2 ):2 1 -2 2 . c: L e t t e r t o t h e E d it o r A concern has arisen am ongst a num ­ber o f physiotherapists recently - amongst them Dr. Wayne D iesel, Jacqui M cCord-U ys and myself, regarding our professional status. This was bom out at All A frica Games in Johannesburg in September, 1999, where Jacqui and I were the organising physiotherapists for the 5000 foreign athletes . We are concerned that our field of expertise as physiotherapists is being eroded from all sides. The chiropractors are perform ing com petent and effective m anipulations and are also doing m yo­ fascial releases, trigger point therapy, P.N.F., exercise/rehabilitation and even acupuncture. The sports m asseur is giv­ ing the sports people what they want ... hands on massage. They are also becom ­ ing m ore and more “know ledgeable “ about sports injuries and expanding their advice and treatment. The biokineticians are well into the field o f exercise and rehabilitation. They are energetically attending all the courses on pelvic stabilization, sports injuries etc. They too, have greatly expanded their field. At the All A frica G am es a multi disci­ plinary m edical team attended to the “5,000 foreign athletes at the medical clinic in the A thletes Village. The core group consisted o f 3 sports physicians and two physiotherapists. There was also an orthopaedic surgeon, general prac- tioners, pharm acists and a pathology laboratory. The rest of the medical team com prised of 63 physiotherapists , 140 physiotherapy students, chiropractors - 150 and sports m asseurs - 100 The bio­ kineticians could not attend. At the A frica Games we were sad to see a trend developing whereby the chiropractors and the sports masseurs were referring the athletes to physiothe­ rapy for M ACHINES !! The interaction betw een our disciplines was excellent and we have no problem with these pro­ fessions. In that environm ent at the Games we could address this false per­ ception. The worry is that this is happen­ ing OUT TH ER E ! The only solution is that we, as p h y ­ siotherapists, M U ST continue to raise our standards and provide the patients w ith consistently excellent treatm ent. We could not agree m ore with the letter from Brun W inter in the Septem ber ed i­ tion that “ to be successful you d o n ’t have to do extraordinary things, ju st do ordinary things extraordinarily well.” We have a wonderful profession, but we cannot sit back and presum e that all will be well. We need to be involved with continuing education and research. Let us strive to give our patients our absolute best at all times. HELEN MILLSON (M.C.S.P.) This letter is published in its o rig in a l Form. The SASP a n d the Editor does not assum e a n y responsibility fo r statements m a d e , n o r a re the view s expressed in co rrespo ndence published necessarily those o f the SASP o r the Editor. 28 SA Jo u r n a l o f Ph y s io t h e r a p y 2000 V o l 56 No 1 R ep ro du ce d by S ab in et G at ew ay u nd er li ce nc e gr an te d by th e P ub lis he r (d at ed 2 01 3. )