Care pathway and service needs for children
and young people with autistic spectrum disorder
w1 Stone WL, Hoffman EL, Lewis SE, Ousley OY. Early recognition of autism: parental reports vs. clinical observation. Arch Pediatr Adolesc Med 1994;148:174-9.
w2 Filipek PA, Accardo PL, Baranek GT, Cook EH, Dawson G, Gordon B, et al. The screening and diagnosis of autistic spectrum disorders. J Autism Dev Disord 1999;29:439-84.
w3 Rutter M, English and Romanian Adoptees (ERA) Study Team. Developmental catch-up and deficit following adoption after severe global early deprivation. J Child Psychol Psychiatry 1998;39:465-76.
w4 Kim JA, Szatmari P, Bryson SE, Streiner DL, Wilson FJ. The prevalence of anxiety and mood problems among children with autism and Asperger syndrome. Autism:Int J Res Pract 2000:4:117-32.
w5 Emerson E. Prevalence of psychiatric disorders in children and adolescents
with and without intellectual disability. J Intellect Disabil Res
2003;47:51-8.
Care pathway and service needs for
children and young people with autistic spectrum disorder (Posted as supplied
by author, Gillian Baird)
| Individual Level | Local Operational Level | Local Strategic Level | Regional/National Level Legislation/guideline Levers | Key NSF Aims |
| IDENTIFICATION | ||||
| Parent concern or professional concern | Continuous awareness of pointers to autism through multidisciplinary training | Screening not currently recommended Ensuring training budget and program | NIASA (national working party
guidelines) National screening Committee Regional support with training | Early identification |
| Primary care contact This could be health visitor, playgroup, teacher | Primary care person must know
how to access support/intervention, usually health service resource Clear written pathway of referral | Every district to have a strategic planning multi-agency group to develop referral pathway with clarity of access eg. child health services (CDC) for preschool but school age children currently less clear pathway (need to ensure SEN practice fully integrated) | Look for sources of Funding from current initiatives eg. use of health act money | Easy equitable Access to competent
services Multi-agency strategic planning group |
| REFERRAL and | ASSESSMENT | |||
| Referral for assessment Referral for intervention eg playgroup/therapy/ portage for preschool. | Referral acknowledged, waiting
times monitored
| Accurate database and record keeping Provision of preschool placement/homebased intervention/support that promptly responds to concerns | Waiting times for diagnosis/services monitored | Prompt access Competence of professionals Therapy /education/support services that meet needs |
| Assessment for needs and diagnosis Strengths and weaknesses identified, | Triage by GDA(general developmental
assess.) and rapid referral to specialist ASD team if indicated for Multi
Agency Assessment Agreed shared assessments to be used by all team for NIASA
recommendations
| Multi-agency and multi-disciplinary
team available (NIASA recommendations) as
in NIASA with team members competent in ASD Strategic agreement of shared assessments. Use of shared assessments monitored. Paediatrician trained in Neurodisability in every district | Training of all professions implemented
and monitored eg training for paeds. in neurodisability Dissemination of
best practice guidelines on assessment, investigations Training for standardised ASD assessments | Services for ASD part of services for all children who have developmental concerns but with specific ASD competence. Each professional discipline to define competence and training needs |
| Systematic Multi- disciplinary
assessment of needs including systematic assessment for co-morbid problems of health eg epilepsy, development eg. motor impairments and mental health/behavioural | Themes from ‘framework for assessment’
used. All agencies represented in assessment
| Voluntary agencies and service
users represented on strategic planning group Audit of age of referral and diagnosis | Tertiary services to be available
for second opinions/ complex problems on a regional basis. Multi-agency
joint paediatric/psychiatric model for health with education/soc. serv.
Input recommended Tertiary services to assist with reliability if diagnoses | Parent/user involvement in
service planning and provision ‘Can do’ professional attitude. Multi-agency integrated working Quality control |
| INTERVENTION / | SERVICE PROVISION | |||
| Parents want practical therapeutic
intervention provided which may be provided in parallel and as part of
assessment Diagnosis not a prerequisite for intervention services Child centred and family needs led services
| prompt response to needs for different
functional problems eg. behaviour, communication,
sleep Liaison with the LEA; other referrals to appropriate services All therapists to have ASD competence
| Districts to provide for range
of functional needs and family support. Examples are community nurses trained in behaviour, teacher or speech therapist trained in autism communication, PECS etc. Audit of access to services Child behaviour (like child health) to be a district wide public health responsibility. | Regions/tertiary services to support
district services through seminars, population data collection, joint training
of different disciplines
| Team around the child Intervention that matches needs
|
| Parents to have access
to information Key worker roles available (signpost to services /advocate/initiator or identifier of need/care manager) | Team member to undertake
role of information transmission and discussion. Voluntary agencies/ websites accessed, Written reports to parents Parents groups eg. ‘Early Bird’ in every district Care coordination appropriate to needs. Key worker to be identified | Strategic planning
group to identify gaps in services eg. Key worker roles and who might provide
service in multiagency local team Voluntary agencies/ websites accessed, Care coordination/key worker system supported | Kite marking of best
sites on internet Expert patient model/ personal care plan monitored | Information made
accessible Expert patient model welcomed ‘key worker roles’ |
| Educational services (Preschool/school age) provided which have ASD specialism and knowledge | Home liason/visiting therapy package
linked to school provision Appropriacy of provision for education monitored by multi agency working for all children | Suitable range of preschool facilities,
either autism specific or autism appropriate to be available from age 30
months Educational integration with health and social services/voluntary agencies to be monitored—shared databases, shared language, | Whole school attitudes eg. specific ASD understanding by staff, bullying policies/pastoral care tackled through school and society approach to caring about such issues and training. | Disability rights/legislation |
| TRACKING AND ONGOING ACCESS TO SERVICES | ||||
| On-going monitoring required for
all with ASD diagnosis
| Key contacts identified and proactive contact system organised ( SEN annual review to be utilised by those with statements and all members of agencies to prioritise attendance) | Strategic agencies to work together
on triggers for concern/ intervention. Data collection, identifying children with ASD and services | Life-time care for a life-time disability varying in need and manifestation | |
| Family support needs Respite needs Sibling needs identified Housing requirements identified eg. Safe room, garden Play/leisure/exercise facilities, home and community identified | Need for respite discussed and
information given eg. for respite in the home, overnight local respite provision (ASD-friendly) sibling groups
| Range of services to be available
flexible in use. Use of initiatives such as direct payments Housing represented on multi-agency group (this is v unlikely, more likely on local pan-disability service planning group) Council leisure and private providers represented on strategic planning group | Direct payments | Family support Inclusion for all family members in life’s opportunities. Housing and leisure services-inclusion in multi-agency planning |
| Problem solving as needs change
eg, mental health or behaviour problem, intercurrent illness, dental care Child and family needs listened to | Contact/access point to advice
eg. Child health re illness Mental health services Dental services Learning difficulties/problem
assessment Behaviour problems to be tackled proactively—attitude of behav/mental health support for child health services in meeting behavioural needs of ALL children and more specialised mental health team for complexity including mental illness | Strategic planning to ensure that
all such services are available, Model of mental health working with child
health able to see those with learning disability and without is recommended. Emphasis on multi-agency shared assessment and working
including in school for behaviour problems Local services to ensure commissioning for specialist services available for some including inpatient psychiatric facilities Joint budget for placement for some children | Tertiary paediatric neurodisability/CAMHS
services available for mixed complex problems/second opinions/outreach
services in every region Monitoring of waiting times
and need for such services National monitoring of need for specialist out-patient and in-patient services, specialist schooling and care needs
| Mental health services integrated
with child health services and available to all children and young people
regardless of learning difficulty Ongoing needs identified promptly and access to competent services provided following principle of specialism within services available to all children and families |
| TRANSITION | ||||
| Transition needs Social and leisure Jobs/ FE Independence training Independent living options | Operational
inter-agency transition group to include YP with ASD, identifying and ensuring
planning for individual needs Identification of needs and skills for adult independence and teaching/therapy needs. Planning task and timing identified (connexions may be useful but only for statemented children/young people) | Strategic group plan for adult
transfer and identify medical care for mental health and physical health
issues. Social services identified for ‘high functioning’ for independence support and benefits Liase with local job centres and housing | Connexions
to include responsibility for YP with disability including ASD ‘Prospect’ services to disseminate expertise
| Transition to adult health services, jobs, housing, leisure access, social support |