Laois Offaly Families For Autism (LOFFA) Chairperson of LOFFA Parent support group covering counties of Laois and Offaly Approx 400 families in contact with LOFFA but we know there are many more out there Laois/offaly do not have a disability school age team in place although referrals have been accepted to school age team since 2013. Current waiting list for psychology services are 4 to 5 yrs with no psychologist in place And up to 4 yrs for OT services Laois Offaly Families For Autism (LOFFA)

Family Perspective of HSE Services ‘Chaotic dysfunctional system’ Delayed and Missed Diagnosis Services / Interventions practically non existent No clear referral pathways Children in most need are most neglected A ‘one size fits all’ approach Primary care services favoured above disability services in allocation of resources ‘Complex game of pass the parcel’ Frequent reporting of delayed and missed diagnosis Parents of children with moderate to severe ASD and non verbal children report that their children are waiting the same length for a block of service as less severe children and provided with the same quantity or block of intervention Recent waiting list and times for Primary care psychology service L/O one of the best performing HSE areas in the country while disability psychology service is non existent with one of if not the worst service Children constantly referred between hospital, disability services and CAMHS while nobody takes responsibility and child’s needs aren’t met Laois Offaly Families For Autism (LOFFA)

Expectations of Services Respect Honesty Transparency particularly in how resources are allocated and how waiting lists are managed Meaningful, appropriate and timely interventions A support system Better communication Clear referral pathways Experienced professionals and specialist services Better working relations between health and education A robust complaints/appeals system Parents report feeling disrespected, that there’s a lack of honesty from all areas of HSE on enquiring about waiting times, responsibility of services and in reporting on their concerns . They further report a lack of transparency on how resources are allocated and how waiting lists are managed. Some parents have access to more services in a shorter period of time. Parents require access to support and appropriate timely interventions. Eg receiving invitation to workshops after years on waiting lists that are no longer appropriate to their children’s needs. SLT services focus on speech but many verbal children require intervention for communication and language difficulties A need for better communication between therapists and families, between different disciplines of therapists, a more conjoined multi disciplinary approach Poor communication is systemic from management down to therapists and everyone in between Access to specialist services such as behavioural support, feeding clinics Children being passed between disciplines or services often for years with nobody taking responsibility or providing service. A need for more coordinated effort between services to address child’s needs. Therapists advising and providing services through schools Complaints system that is complex, over stretched and often pointless with no accountability Laois Offaly Families For Autism (LOFFA)

Laois Offaly Families For Autism (LOFFA) What has worked Advisory Clinics Parental Workshops Key worker or one point of contact Respite service Advisory Clinics and parental workshops particularly where several disciplines are involved have been of help but need to be up to date and innovative and leave time for individual questions and networking Families need one point of contact in services who will assist them navigate services and advocate for their child More time is wasted chasing up services than actual services delivered Respite services are important to families but there’s not enough available Laois Offaly Families For Autism (LOFFA)

Laois Offaly Families For Autism (LOFFA) Assessment of Need Disregard of legislation and Standards for AON AON officer should keep family up to date Information should be provided Complaints should be dealt with swiftly Preliminary assessments or screenings not enough AON should not prevent child accessing interventions 0 to 18 seamless services Assessment team and Intervention team Requested to make particular focus on AON. Similar issues as general issues stated AON officer under the standards for AON have a responsibility to assure a coordinated approach to assessments. They also have a responsibility to ensure the family are kept informed and that timeframes are adhered to However this rarely happens. Families are having to constantly chase AON officer and HSE to get assessments completed and reports and service statements issued. They shouldn’t have to do this. We believe it’s the AON officer’s role to keep them informed of progress. Where AON runs overtime and HSE have good reason to require more time that good reason should be clearly explained and a new timeframe agreed with parents. AON obligations and a copy of the Standards for AON should be furnished to parents on application. Parents should be informed of their right to apply for AON on first referral to HSE Complaint and appeals system is not robust enough and more disability complaints officers are required and the DAO role needs to be reinstated as an independent office Preliminary ‘Preceding or done in preparation for something bigger There should be a separation of assessment and intervention/service teams with a 0 to 18 seamless service Laois Offaly Families For Autism (LOFFA)

Laois Offaly Families For Autism (LOFFA) Assessment of Need Diagnostic assessment Finding of Disability Appeals Officer ‘Whilst the Act provides a right to an assessment of need and not a right to a diagnosis, where a diagnosis is considered to be necessary or desirable in order to complete a comprehensive ‘assessment’ of an applicant’s needs, a diagnostic assessment may well be required’ LOFFA’s view;- In order to understand ‘the nature and extent of disability’ a diagnostic assessment where ASD is suspected is warranted It is the view of LOFFA parents that timely diagnosis and appropriate interventions are a matter of urgency for children with ASD. The delay in and difficulty with missed diagnosis needs to be addressed. We believe that where red flags are raised for ASD the child should be referred to an expert team experienced in assessing and diagnosing ASD without delay and that diagnostic assessment for ASD should be carried out where appropriate as part of the AON process End by saying that this 2 day consultation should be the start of consultation and not the end of consultation process Laois Offaly Families For Autism (LOFFA)