early support seminar rosemary marks

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

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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

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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

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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

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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

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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

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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

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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.

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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

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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

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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)

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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

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• 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

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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

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Society Paediatric

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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

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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?

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Society Paediatric

Parents and families

• Parental roles– Nurturing Parent– Caregiving Parent– Nurse– Educator and Therapist– Advocate

• Grief• Demands of care• Costs of care

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Society Paediatric

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Society Paediatric

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Society Paediatric

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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

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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

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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

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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

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Society Paediatric

FUNDING STREAMS

MOH ACC

PERSONAL HEALTH

MENTAL HEALTH

DISABILITY SUPPORT

DHBs

JOE

NASC

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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.

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Society Paediatric

• Disability– NASC services– Benefits– Other supports

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What support do the family have?

• Family/whanau support and resources

• Community support and resources including parent support groups

• State-funded support and resources

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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

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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.

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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

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Society Paediatric

RESPITE

• Communication:– Clear information about routines– Emergency care plans– Who to call and when to call – everyone is

different

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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

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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.

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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.

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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

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Society Paediatric

Parents and families

• Parental roles– Nurturing Parent– Caregiving Parent– Nurse– Educator and Therapist– Advocate

• Grief• Demands of care• Costs of care

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Society Paediatric

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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!

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Society Paediatric

Maslow’s hierarchy of needs

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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

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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

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Society Paediatric

ANY QUESTIONS?