Table of Contents
Learning about your child’s disability - First steps
- Talk to your Family Doctor or local Public Health Nurse. They can provide information and refer you to services.
- You can be referred directly to your local Children’s Disability Network Team if you have questions about your child’s development.
- If you believe your child may have a disability, you can also choose to apply to the Health Service Executive to carry out an assessment of your child’s needs. This is called an Assessment of Need. You do not need an assessment of need to be referred to your children’s disability network team.
- The HSE Children’s Disability Supports and Services and the Citizens Information Caring for a Child with Disability webpages set out useful first steps and provide links to services and supports.
- Contact a local family support group in your area. Our Connect Family Network Map lists over 100 national and local intellectual disability support groups.
- A diagnosis or report does not change who your child is, their unique personality or strengths. Take time to find out what your child’s strengths are, what they enjoy, what interests them. That is what often directs to where we do best.
Further information:
Citizens Information Service – Caring for a child with a disability
Down Syndrome Ireland – Information, help and advice for new and expectant parents and families.
HSE – Children’s disability services
Prader Willi Syndrome Ireland – New diagnosis
Rare Ireland – supporting families living with rare conditions in Ireland
Rett Syndrome Association of Ireland
S.O.F.T. Ireland Support Organisation for Trisomy 13/18 (Patau’s/Edward’s Syndrome) – Information
Assessment of Need
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How can I access an Assessment of Need for my child?
If a parent or guardian believes that their child may have a disability, they may apply to the Health Service Executive to carry out an assessment of their health needs arising from their disability. Any child or young adult born after June 1st, 2002, is eligible to apply for an assessment, regardless of age.
Please note: You do not need an assessment of need to be referred to your local children’s disability network team.
The Disability Act 2005 legally requires the Health Service Executive to carry out the assessment of need. There are strict time limits for completion of assessments. The Disability Act 2005 says the assessment of need shall determine whether the child has a disability as defined by the Disability Act. This definition is not linked to any diagnosis or list of conditions. Where it is determined that the child has a disability the assessment shall determine the nature and extent of disability, shall state the health and education needs, shall state the services the child needs and shall state when and for how long the services should be provided.
Before making arrangements for clinical assessments to be administered, Assessment Officers will be satisfied, based on a desktop examination of the application, and supporting information, that there is sufficient evidence to suggest that the child / young person may meet the definition of disability. The Assessment of Need must be commenced within 3 months of the date of the receipt of the application or request. The assessment must be completed within a further three months from the date on which the assessment commenced.
Part 2 of the assessment of need process is the service statement. Based on the assessment of need, where it is determined that the child has a disability, the HSE (Health Service Executive) must prepare a Service Statement. The service statement sets out the health services education services or both that the child will need access to. The service statement will also set out the period of time within which such services will be provided. Please note, that while there is an obligation on the state to provide the assessment of need, there is no legal obligation on the state to provide the services outlined in the service statement.
A one-month period is allowed to produce the Service Statement. The Assessment Report and Service Statement will be issued simultaneously.
If at any time during the Assessment of Need process, the Assessment Officer is of the opinion that intervention is required as a matter of urgency s/he will ensure that an immediate referral is arranged to the relevant children’s disability network team.
The Assessment Officer will ensure that the Assessment of Need process does not unduly hinder or delay intervention. Where necessary, the Assessment Officer will escalate any issues to the relevant Head of Service.
When an Assessment Officer is of the opinion that there is a requirement for an education service to be provided to an applicant, they must request the NCSE (National Council for Special Education) to nominate a person with appropriate expertise to carry out the assessment of the applicant’s education needs.
Further information about the Assessment of Need: HSE Assessment of Need Standard Operating Procedure.
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How do I complain if I am not happy with the Assessment of Need?
A parent may complain to the HSE for one of the following reasons:
- A determination that the child does not have a disability and you disagree.
- The time limit for assessments is not adhered to.
- If HIQA (Health Information and Quality Authority) standards are not adhered to.
- The content of the service statement or if any service in the service statement is not delivered.
If you are unhappy with the HSE Complaint Officer’s findings, you may appeal to the Office of the Disability Appeal Officer. Their decision is final.
HSE – Complaints Procedure for Assessment of Need (Disability Act 2005)
Progressing Disability Services for Children and Young People
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What is “Progressing Disability Services for Children and Young People”
“Progressing Disability Services for Children and Young People’ is an HSE (Health Service Executive) programme which aims to achieve a single national approach to delivering disability services. There should be a clear pathway to services for all children regardless of where they live, what school they go to or the nature of their disability or delay.
The programme also aims to ensure that children receive the health and social care services they need as close to their home and school as possible. The programme may also be called the PDS programme. Under the Progressing Disability Services Programme specialist support for children with a disability is provided by local Children’s Disability Network Teams.
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How do I access a Children’s Disability Network team?
Your child does not need an Assessment of Need to access the team. You can apply directly to Children’s Disability Network Team in your area.
It might be a good idea to talk to your G.P. or public health nurse to assist you.
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What is a Children’s Disability Network Team or CDNT (Children s Disability Network Team)?
A children’s disability network team (CDNT) provides specialised support and services for children who have a disability and complex health needs associated with their disability.
There are 91 CDNTs (Children s Disability Network Team) located across 9 Community Healthcare Organisations (CHOs).
The total number of approved staff is 2,102.62. As reported at the end of 2022, there are 1,395.30 filled posts, of which 1,183.01 are in a therapy / clinical role. There are 707.32 vacancies across the 91 teams. The average vacancy rate nationally is 34%. The vacancy rate ranges from a low of 19% in CHO3 to a high of 43% in CHO8.
An analysis of the data from 2021 and 2022 demonstrates an increase of 11% in the number of approved posts for CDNTs- this means the number of posts that the HSE has permission to recruit for.
Across the CDNTs vacancy because of maternity leave equates to 95.98 staff (71.52 on paid maternity leave and 24.46 on unpaid maternity leave). As maternity leave cover is unfunded it is not custom and practice in many agencies to backfill these vacancies.
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How many Childrens Disability Network Teams are managed by the HSE and how many by other agencies?
The HSE is the largest employer and manages 41 CDNTs and have 572.94 filled positions and 359.32 vacant positions (932.26 total). There are 18 employers in total across the 91 CDNTs. 73% of staff are employed by statutory (HSE / S38) providers and the remainder employed in section 39 organisations.
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What is the experience of children and families accessing Progressing Disability Services?
1013 families responded to the Inclusion Ireland Progressing Disability Services Survey in February 2022. The three key issues identified by families needing services for their child were:
Lack of services: 83% of respondents reported lack of services as one of their top 3 issues when surveyed. Many parents reported that their child spent a considerable time on a waiting list for assessment or therapy intervention. 95% have waited more than 6 months to avail of services, 85% reported that they have waited or continue to wait for more than a year. 27 Families reported distress on receiving service statements which highlighted a need for intervention and the scheduled date for intervention often two years from the time of assessment.
Communication: 48% of families cited difficulties with communications from the services as one of their top 3 issues with the service. Families describe a lack of clarity in relation to plans and time limits for Progressing Disability Services for Children.
Quality of service: 19% families provided us with detail relating to quality of service in relation to progressing disability services in their top issues. This included only children who have received a service. Examples of the poor quality include lack of frequency, consistency and quality of interventions, difficulties with staffing and lack of joined up working with schools or other services.
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Further information:
New Directions
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What is “New Directions”?
New Directions was a review of HSE (Health Service Executive) day services and personal support services for adults with disabilities, carried out between 2007 and 2012, with a report and an implementation plan for 2012 to 2016.
A day service operating under New Directions should provide a quality, person centred supports programme for each person attending the day service.
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What were the findings in 2008, in relation to day service provision?
In 2008 the New Directions review recorded 81 organisations providing day services to over 25,000 people in 817 locations. Over 90% of day services were provided by voluntary organisations, the remainder by the HSE. All were funded by or through the HSE. Over 50% of all users had an intellectual disability, 29% had mental health difficulties, 16% had physical and sensory disabilities and 1% had autism.
Service provision included day care for persons with high support needs, day activation incorporating active community inclusion, sheltered work (with discretionary payments or payments less than the minimum wage), open employment (with and without support), rehabilitative training, education programmes and voluntary work (as chosen by the individual).
There were 5600 staff working in daycare services, mostly care support workers, supervisors, and instructors. Approximately 15% of staff fulfilled therapy, clinical and nursing roles.
Consultation found that daycare and support services were diverse with no nationally agreed or clearly defined service model. There was wide variability in structure and quality. Funding was varied and inconsistent.
The review identified good experiences and worthwhile activities. It also highlighted the absence of choice, time spent doing nothing or doing repetitive activities of little use or value.
People with disabilities sought worthwhile activity, work, and training, wanted to do ordinary things in ordinary places, to be part of the community, to be independent, to make plans and to make choices.
Service providers sought funding and staff to meet service demands and quality standards and systems for monitoring services, to support providers to achieve common high standards.
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What does the New Directions Report recommend for the Individual?
New Directions recommends person-centeredness, community inclusion, active citizenship, and high-quality service provision. This means living and working in ordinary places, access to local services and facilities at ordinary times, community life and association.
The report identifies a menu of 12 individual supports that should be available to an adult with a disability. These include support for:
- making choices and plans and making transitions and progression
- inclusion in one’s local community
- accessing education, training, and work and
- maximising independence
- health and well-being and personal and social development
- personal expression and creativity
- having meaningful social roles and
- Influencing service policy and practice.
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What does the New Directions Report recommend for day services and supports?
Under New Directions, a person-centred day service is one that listens to and respects the person, has high expectations for the person and helps the person to manage risk and challenges. It also means providing ways for individuals and their families to influence policy, planning and review.
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Under New Directions, what is the role of the HSE?
New Directions recommends that the HSE be responsible for the promotion, evaluation and quality assurance of day services and personal support services.
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Is New Directions a legal standard for day services?
New Directions is a policy document. It recommends principles and a course of action for day service provision. In 2018 the HSE agreed to progress the implementation of Interim Standards for New Directions while waiting for the introduction of independent regulation by HIQA.
The Interim Standards are being implemented through a process of self-evaluation by each service location provider. The interim standards are guidelines. They are not a legal standard and are not subject to independent inspection.
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Further Information
Crossborder Healthcare Directive
What is meant by Cross Border Healthcare?
Ireland is bound by the EU, Cross Border Healthcare Directive.
Any Irish citizen can choose to access healthcare abroad in another EU state. The cost of this health service will be refunded by the HSE (Health Service Executive). You will need a referral letter from your GP (General Practitioner), consultant or another clinical professional.
Some of the services that can be accessed include psychology, occupational therapy, physiotherapy and speech and language therapy.
The service you wish to access must be publicly available in Ireland.
You can no longer use the Cross-Border Healthcare Directive to access healthcare in the UK. The Northern Ireland Planned Healthcare Scheme is a temporary scheme that allows you to receive healthcare in Northern Ireland in an equivalent way to the Cross-Border Healthcare Directive
You must be referred for the service you require, by your family doctor or public hospital consultant for example
You must pay for the treatment upfront and claim back the costs.
Ensure that you have prior approval before paying for treatment abroad.
Further information
Citizens Information Service – Cross-Border Healthcare Directive
HSE Cross Border Directive: Get Healthcare Abroad
Or
HSE Cross Border Directive National Contact Point,
St. Canice’s Hospital Complex, Dublin Road, Kilkenny
General enquiries: 056 778 4546 or 056 772 0551
If you have difficulty reaching HSE by phone, you can:
- request a call back – send us an email with your name and contact number
- send us an email with your enquiry
Email: crossborderdirective@hse.ie
