early support seminar rosemary marks
Post on 18-May-2015
766 Views
Preview:
TRANSCRIPT
New Zealand
Society Paediatric
EARLY SUPPORT FOR CHILDREN WITH DISABILITY
ROSEMARY MARKS
DEVELOPMENTAL PAEDIATRICS
STARSHIP CHILDREN'S HOSPITAL
New Zealand
Society Paediatric
Overview• Early Correct Diagnosis
– Why is it important– Barriers to Early
Diagnosis
• Early Supports currently available;– Education– Parental roles– Other supports– Parental self care
New Zealand
Society Paediatric
Early Diagnosis - Why is it important?• Most (85%) brain
development occurs
before 3 years of age• Child’s experiences
during these years that
enable brain to grow.• Relationally-rich experiences provide children
with the 'brain-food' they need to grow into happy, secure and well functioning adults
New Zealand
Society Paediatric
Early Diagnosis
• A child’s developmental course is determined genetically, in combination with their environment
• Children are “wired” to learn, and will do so unless in a deprived environment
• Evidence that Early Educational Intervention improves long-term outcome
New Zealand
Society Paediatric
Early Correct Diagnosis• Parental concerns about their child’s development
need recognition/validation• Early intervention does not require a diagnosis• However, a diagnosis serves as a “short-hand” to
direct the most appropriate action at the best time• A correct diagnosis empowers by enabling
understanding of needs and what the future may hold. It defines both strengths and difficulties
• Potential dangers of diagnosis – restricting future possibilities
• Accurate diagnosis must be timely, high quality and collaborative
New Zealand
Society Paediatric
BARRIERS TO EARLY DIAGNOSIS
• Difficulty not recognised:– Parent and/or family; societal change– Health providers– Education providers
• Difficulty not acknowledged – denial:– Parent and/or family– Health providers– Education providers
New Zealand
Society Paediatric
BARRIERS TO EARLY DIAGNOSIS
• Access to diagnostic services:– Gatekeepers– Geographical barriers– Administrative barriers– Cost
• Appropriate knowledge and expertise
• Philosophical barriers
• Cultural and language barriers
New Zealand
Society Paediatric
BUT…ITS GETTING BETTER
• Improved knowledge base of professionals
• Emphasis on evidence based practice
• More availability of training
• Parents have more access to information – the internet (good, bad and ugly)
• Improved technology – especially imaging and genetics – means earlier correct diagnosis is possible e.g. PWS
New Zealand
Society Paediatric
Early Supports
• Goal of Support and Management of Disability:– Treat or minimise
impairment and maximise potential
– Change environment so it is more enabling not disabling
– Prevent complications of disability
– Support family / whanau in providing care for disabled child and themselves.
New Zealand
Society Paediatric
Educational and Intervention Services – under 5s
• Child Development Teams (DHBs)• Special Education (Ministry of Education)
– Early Intervention Teams– Early and Ongoing Support (Auckland Region)
• CCS Disability Action• Ohomairangi Trust• Preschool programmes in Special Schools• Subsidised providers e.g. Conductive Education• Private providers
New Zealand
Society Paediatric
Educational Services – 5+Special Education (Ministry of Education)• Special Education Grant• RTLBs• Supplementary Learning Support• ORRS• Severe Behaviour• Communication• High Health Needs• Moderate Physical Needs
Fund-holding and Special Schools
New Zealand
Society Paediatric
Educational Strategies• Focus on quality of learning not quantity, enjoyment, and
participation • Highly structured and predictable classroom routines• Individualised programme• Recognise fatigue (headaches /irritability) from
concentrating twice as hard as average kids• Reduce instruction length and reinforce verbal
instruction visually (and vice versa) and give child time for response
• Organise complex tasks into simple steps and prompt• Reduce distraction (sit at front next to studious kids)• Encourage/reward achievement• Allow self-regulation for stress (time-out area, run
around, squeeze a ball)
New Zealand
Society Paediatric
Goals – Early and Sustained Support
• High quality – “evidence-based”• Appropriately and securely
funded• Timely, frequent and sustained• Integrated/coordinated• Family-centred• Empowering:
– enhancing participation and quality of life
– Minimising impact of disability on self and family
New Zealand
Society Paediatric
• Barriers to Early Support– Socio-economic
• Family stress• Transport difficulties• Priorities
– Cultural • Acceptance both positive
and negative – Agency
• Lack of continuity (short-term contracts)
– Personal• Care needs overwhelm• Lack of knowledge of who
provides what and how to access
– Professional• Lack of Funding/Time to
provide best care• Poor coordination and
information sharing
• Solutions– Improved targeted financial
assistance– Wealth shift– Mentor/Model/Guide– Better education /
information– Whanau/Community– Improved coordination /
cooperation intra-agency– Managed Clinical
Networks / NHB?– Sustained funding
New Zealand
Society Paediatric
In the forest of disability support – finding the path
ROSEMARY MARKS
DEVELOPMENTAL PAEDIATRICS
STARSHIP CHILDREN'S HOSPITAL
New Zealand
Society Paediatric
Clear as Mud
Developmental Services and Referrals
Jutta van den Boom, 2008
New Zealand
Society Paediatric
New Zealand
Society Paediatric
LOST IN THE FOREST - A GUIDE TO FINDING THE
CANDY HOUSE
SUPPORT FOR FAMILIES WHO HAVE A CHILD WITH CHRONIC
ILLNESS OR DISABILITY
New Zealand
Society Paediatric
Is there a common theme here??
And if health professionals find the system difficult to negotiate – how hard is it for users of the system?
New Zealand
Society Paediatric
Parents and families
• Parental roles– Nurturing Parent– Caregiving Parent– Nurse– Educator and Therapist– Advocate
• Grief• Demands of care• Costs of care
New Zealand
Society Paediatric
New Zealand
Society Paediatric
New Zealand
Society Paediatric
New Zealand
Society Paediatric
Parents and families• Informal carers
– Family members who provide day to day care, – Not typical for other people of that age– Not paid (though may receive “benefit”)– Usually a long-term responsibility
• Formal carers– Usually unrelated to person cared for– Paid (though low rates of pay)– Defined tasks and hours of work
New Zealand
Society Paediatric
Costs to Families
• Additional Costs of Disability and/or Illness
• Loss of Earnings
• Emotional Costs to all Family Members
• Planned Change to Family Structure
• Family Breakdown
New Zealand
Society Paediatric
Costs to Families:Additional Costs of Disability and/or
Illness• Additional Equipment Needs
– e.g. incontinence aids– Electricity costs for oxygen concentrator
• Supplementing State Funded Services e.g. speech therapy
• Housing Alterations– Child in master bedroom because of equipment
• Repairs to Damaged Furniture etc.• Child Care Costs
New Zealand
Society Paediatric
Costs to Families:Loss of Earnings
• Mothers (usually) who do not return to workforce• Longer interval to next child delays return to
work• Difficulty in obtaining childcare• Redundancy• Fathers lose time from work to attend
appointments with professionals
New Zealand
Society Paediatric
FUNDING STREAMS
MOH ACC
PERSONAL HEALTH
MENTAL HEALTH
DISABILITY SUPPORT
DHBs
JOE
NASC
New Zealand
Society Paediatric
• Chronic illness– Carer support– Family options
• Carer support for children with chronic illness– “A very random process” (personal
communication, social worker, Starship Med specs ward)
– Only GPs and specialists can sign (changing?).– MOH sometimes request further information.– Comes from DHB personal health budget (we
think).– Not available in some DHBs.
New Zealand
Society Paediatric
• Disability– NASC services– Benefits– Other supports
New Zealand
Society Paediatric
What support do the family have?
• Family/whanau support and resources
• Community support and resources including parent support groups
• State-funded support and resources
New Zealand
Society Paediatric
State-funded Support and Resources
Work and Income (MSD)
• Childhood Disability Allowance (CDA)
• Other Benefits– Invalid benefit if >16 years– Sickness benefit if >16 years and in NZ <10 years– Disability Allowance– Day care subsidy
New Zealand
Society Paediatric
State-funded Support and Resources NASC- Needs Assessment Service Co-ordination• Eligibility
– Must meet MOH disability definition– 0-65 years
• Provision– Carer Support Subsidy ($76 per day)
• E.g. 30 days @ $76 = $2280• 152 hours @ $15 per hour or 6 days and 8 hours or <3 hours per
week over one year– Personal care packages– Residential care– Home alterations/equipment– Access to other services e.g. behavioural programmes,
physiotherapy.
New Zealand
Society Paediatric
RESPITE
• “Out of home” – the person with a disability goes away to be cared for elsewhere
• “In home” – a respite carer comes into your home
• If the respite facility or respite carer cares for your child or adult EXACTLY as you would like them to – you are very very fortunate
New Zealand
Society Paediatric
RESPITE
• Communication:– Clear information about routines– Emergency care plans– Who to call and when to call – everyone is
different
New Zealand
Society Paediatric
MOH disability definitionIn order to access DSS, a person with a disability
must meet the Ministry’s definition of disability; that is, be assessed as having either a physical, intellectual, sensory, psychiatric or age-related disability, or a combination of these, where the disability is likely to:
• continue for a minimum of six months • result in a reduction of independent function to
the extent that ongoing support is required.Source: http://www.moh.govt.nz/moh.nsf/wpg_Index/Publications-
Health+and+Independence+Report+2003+-+online+5
New Zealand
Society Paediatric
NASC – Problems • Lack of information about the process for
families and health providers.• Variation across the country and within
NASCs• Minimal change in “subsidy” over last 20
years.• Failure of contracted “providers” to supply.• Lack of care providing workforce.• Carers’ costs and time for transport to
provide care.
New Zealand
Society Paediatric
QUOTES FROM FAMILIES
• There are huge gaps in services and NASC agencies are hard to get hold of and only seem helpful in crisis. It would be nice to feel supported before things got to that point.
• We are like hostages in our own home.• Families such as ours need ongoing,
reliable and qualified people, working alongside our disabled members.
New Zealand
Society Paediatric
Discharge Planning
• Essential component of quality hospital care• Starts early in hospital episode• Involves family and professional multidisciplinary
team working in partnership• Does not make family responsible for organising
after hospital care• Ensures optimal long term result of
medical/surgical intervention
New Zealand
Society Paediatric
Parents and families
• Parental roles– Nurturing Parent– Caregiving Parent– Nurse– Educator and Therapist– Advocate
• Grief• Demands of care• Costs of care
New Zealand
Society Paediatric
New Zealand
Society Paediatric
New Zealand
Society Paediatric
THE MESSAGE
• If you do not look after yourself, you will not be able to look after others.
• Carers need:– Personal time– Couple time– Time with other family members
• Other family members need:– Time with you!
New Zealand
Society Paediatric
Maslow’s hierarchy of needs
New Zealand
Society Paediatric
SUMMARY & SOLUTIONS
• Early diagnosis needs knowledge, understanding and openness
• Early diagnosis should lead to early support
• Support needs to be co-ordinated
• Agencies need to work together – and this takes time
• Parents need care too
New Zealand
Society Paediatric
FURTHER INFORMATION
• http://www.kidshealth.org.nz
• http://www.kidshealth.org.nz/index.php/ps_pagename/contentpage/pi_id/21
• http://www.carers.net.nz
• http://www.parentandfamily.org.nz
• http://www.weka.net.nz
New Zealand
Society Paediatric
Acknowledgements:Andrew Marshall
Jutta van den Boom
And the families and children who teach us so much
New Zealand
Society Paediatric
ANY QUESTIONS?
top related