Positive Behaviour Support A Family Perspective Adele Grandon My family and my background What families may experience Possible pitfalls for practitioners Specific issues working with adults Top ID: 768064
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Positive Behaviour Support A Family Perspective Adele Grandon
My family and my background What families may experiencePossible pitfalls for practitioners Specific issues working with adultsTop tipsQuestions, comments, discussion PBS: A Family Perspective
Dec’95: Connor James Grandon bornAug’97: First raised concerns (20 mths) Dec’97: Contacted doctor (2 yrs)Feb’98: Hearing test Apr’98: Diagnosis of autism and SLD ( 2 yrs 4 mths)Dec’98: Started ABA home programme (3 yrs) Jul’06: Diagnosis of epilepsySep’02: Attended Jigsaw CABAS School (6 yrs)Sep’15: Started attending Jigsaw+ (19 yrs) Connor’s Story
Connor
1980-90: Volunteer at swimming club for people with disabilities1995: Connor James Grandon born 1998: Autism research1998–02: Ran Connor’s ABA home programme and own business 2000: Founded SEARCh charity2003-07: WMC College Manager 2007–15: Developed Jigsaw+ adult service, degree in HSC 2015+: Registered Locality Manager at Priory Adult CareAdele’s Story
Therapy/Intervention Research
Our Challenges Non-compliance Fecal smearing Self-injurious behaviour Oblivion to danger ABA dominated in our house! Property damage Hyperactivity / Sleeplessness Breakdown of relationships Health issues Requirement for routine Repetitive behaviour Sensory issues Food issues
The Pros People in your house all the timeIt can be simple, straightforward, common senseProgressGuidelines, structure, routine, agreed common goals, a plan Being around people who understandIt teaches parents/carers as much as childrenA good programme introduced at the right time has the potential to save huge sums The Pros & Cons of ABA at Home The Cons People in your house all the time It can be complicated, full of jargon, hard to understand It’s not a cure –no guarantees A lot of trial and error, with no quick fixes or easy options Programme intensity can be isolating It’s takes time, commitment, focus, drive It isn’t cheap!
The gradual destruction of their home and possessions Deterioration or loss of relationships, marriage, family and friends Constant battling for benefits, resources, support, education Ill health due to lack of sleep, stress, overwork, assaultContinued exposure to seeing the pain and suffering of a loved oneJealousy of seeing others raising children without additional needs Fear... of mistakes, of the future, of what may happen to your child Lack of attention for the siblings without additional needsHelplessness, rage, frustration Guilt... Is this our fault? Loss of identityWhat Families May Experience
Having to be expert in the child’s disability, therapies, interventionsPressure of doing a good job, not being sickFinancial issues Downplay of needs – “at least he’s healthy”, “at least he’s verbal”Not having someone to talk to who understands what it is likeBeing seen as ‘superhuman’ Massive disruption to life, endless appointments, forms, phone calls Family unwilling to follow a programme or treatment Public ridicule, blame, shame, adviceDenial, unrealistic expectations, false hopes People trying to help People not trying to helpWhat Families May Experience (cont)
Conflicting opinions amongst family and providers / parents own agenda Not adapting communication so that everyone can understandNot enough knowledge of the client groupNot understanding how the systems around the individual workFailing to recognise and analyse the role that other settings play Overstepping professional boundaries/going beyond the role limits Parents distrust of practitioners who do not have children/are youngPractitioners knowing nothing about parenting Parents who expect you to fix/cure/sort out their childParents with unrealistic expectationsWorking in a solo bubble without utilising the teamUnderestimating the essential power of creativity Possible Pitfalls for Practitioners
Parents / young adult unprepared for transition to adulthoodParents lack of understanding of MCA Using resources, interventions or approaches for children Less formal daily/weekly routines – it’s not school anymore!Inconsistency – dependency on different people with different training doing different jobsFocus is on what the individual can’t do Belief that someone is too old or set in their ways to benefit from PBS Specific Issues Working With Adults
Consider language - avoid jargon or unnecessary terminologyCollaboration, communication, consistency across settings & providersUse multi-disciplinary teams where possible to support youDifferentiation of delivery across age groups, personalities, settingsIdentify strengths and weaknesses within the environment / family Top Tips
Accept when something is not deliverable (not matter how good!) - pick your battles! Be a source of support without overstepping professional boundariesUse every possible source of creativity for problem solvingBe conscious of what the family is/has been dealing withHave patience, compassion, understandingBe honestCelebrate successes at every opportunity with everybody ! Top Tips (cont)
Questions , Comments, Discussion
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