An Unexpected Journey Navigating the System
Ehlers Danlos Syndrome Awareness IrelandConference 7th March 2014 Presented by Lorraine Dempsey, ChairpersonSpecial Needs Parents Association Special Needs Parents Association 2014
About Us Special Needs Parents Association exists to support all parents of persons with special needs and disabilities irrespective of age or diagnosis, by promoting on a national level, improved treatment, education, welfare and acceptance for our children. The Special Needs Parents Association was set up early in 2010 by likeminded parents from all over Ireland who realised that there was a need for a national organisation to represent the views of all parents of persons with special needs and disabilities, regardless of their diagnosis or age. We chose not to distinguish between parents who had children and persons with physical disabilities; intellectual disabilities, autistic spectrum disorders or non-diagnosed conditions, for all parents had one thing in common. We are parents of persons with special needs and disabilities. Special Needs Parents Association 2014 Circle of support Parents & Child Health Education Welfare Family
Friends Peer Support Groups Community Health Who to contact first? Assessment of Need (AoN) Medical Card
General Practitioner/Local Public Health Nurse Assessment of Need (AoN) Medical Card Long Term Illness Scheme Drugs Payment Scheme Primary Medical Certificate Treatment Abroad Scheme Progressing Disability Services Special Needs Parents Association 2014 Special Needs Parents Association 2014
Assessment of Need An assessment of need is an assessment of the full range of your childs needs associated with his or her disability. After this, you will receive an Assessment Report detailing your childs needs and the services required to meet those needs. If you are of the opinion your child may have a disability and your child was born after 1st June 2002 you may apply to HSE for an Assessment of Need via an appointed Assessment of Need Officer. The AoN process can take up to twelve months. There is no obligation to provide services & waiting lists are common. Special Needs Parents Association 2014 Special Needs Parents Association 2014
Medical Card A medical card issued by the Health Service Executive (HSE) allows the holder to receive certain health services free of charge. To qualify for a medical card your weekly income must be below a certain figure for your family size. Cash income, savings, investments and property (except for your own home) are taken into account in the means test. Medical Cards may also be issued in complex cases where the applicant does not satisfy the means test but the medical needs of the applicant are taken into account. Special Needs Parents Association 2014 Long Term Illness Scheme
People suffering from certain conditions, who are not already medical card holders, can get free drugs, medicines and medical and surgical appliances for the treatment of that condition. These are provided under the Long Term Illness Scheme. This scheme is administered by the HSE. The medical conditions that qualify under the Long Term Illness Scheme are: Mental handicap Mental illness (for people under 16 only) Diabetes Insipidus Diabetes mellitus Haemophilia Cerebral palsy Phenylketonuria Epilepsy Cystic fibrosis Multiple sclerosis Spina bifida Muscular dystrophies Hydrocephalus Parkinsonism Acute leukaemia Conditions arising from use of Thalidomide Special Needs Parents Association 2014 Special Needs Parents Association 2014
Drugs Payment Scheme Under the Drugs Payment Scheme you have to pay a maximum of 144 a month (from January 2013) for approved prescribed drugs, medicines and certain appliances for use by yourself and your family in that month. In order to qualify for this scheme, you must be ordinarily resident in Ireland. Your local pharmacist can provide you with more information and help with application forms. Special Needs Parents Association 2014 Primary Medical Certificate
This is a certificate issued by the HSE which certifies that a person is a severely disabled andpermanently disabled person for the purposes ofDisabled Drivers and DisabledPassengersRegulations 1994. Some of the benefits of this certificate are that you may qualify for a refund of VehicleRegistration Tax, VAT and Excise Duty if you buy a new or second hand car. You may alsoqualify for exemption of road tax and a refund of VAT on motor fuel up to certain limits. You must meet one following criteria to be issued the Certificate: Be wholly or almost wholly without the use of both legs Be wholly without the use of one leg and almost wholly without the use of the other legsuch that you are severely restricted as to the movement of the lower limbs Be without both hands or without both arms Be without one or both legs Be wholly or almost wholly without the use of both hands, or arms and wholly without theuse of one leg Have the medical condition of dwarfism and have serious difficulties of movement of thelower limbs Special Needs Parents Association 2014 Treatment abroad scheme
The HSE operates a Treatment Abroad Scheme (TAS) for people entitled to treatment in another EU/EEA member state. The TAS provides the cost of approved treatments in another EU/EEA member state or Switzerland. The TAS allows a Consultant based in Ireland to refer a patient that is normally resident in Ireland for treatment in another EU member state or Switzerland, where the treatment in question meets the following criteria: (a) The application to refer a patient abroad has been assessed and a determination given before that patient goes abroad. (b) Following clinical assessment, the referring Consultant certifies the following: They recommend the patient be treated in another EU/EEA country or Switzerland; The treatment is medically necessary and will meet the patient's needs; The treatment is a proven form of medical treatment and is not experimental or test treatment; The treatment is in a recognised hospital or other institution and is under the control of a registered medical practitioner; The hospital outside the state will accept EU/EEA form E112 (IE). Special Needs Parents Association 2014 Progressing Disability Services for Children & Young Persons 0-18yrs
The project is being organised at national, regional and local level and includes representatives from services (both health and education) and parents getting together to see how current services can be re-organised to achieve this better structure. The vision for the programme is One clear pathway to services for all children with disabilities according to need. Resources used to the greatest benefit for all children and families. Health and education working together to support children to achieve their potential. Parent Information meetings have been rolling out in HSE areas since late 2011t o inform parents & nominate parent reps to sit on Local Implementation Groups. Special Needs Parents Association 2014 What will PDS look like? Special Needs Parents Association 2014 Special Needs Parents Association 2014
Education Considerations Your childs needs Your childs best interests Your own preference The needs of other children in the school setting. Settings Pre-School- Mainstream, Special Pre-School, ASD Pre-School Unit Primary School-Mainstream, Special Classes, Special School, ASDUnits Secondary School-Mainstream, Special School, ASD Unit Home Tuition Third Level-University with supports (DARE ) & Adult LearningNetworks, Special Needs Parents Association 2014 Special Needs Parents Association 2014
Educational Supports Special Needs Assistants General Allocation Model Resource Teaching Visiting Teacher Service Assistive Technology Equipment Special Transport National Educational Psychology Service Special Needs Parents Association 2014 Special Needs Assistants
SNAs are appointed to schools to assist with care needsof pupils with disabilities. This can include help with activities like clothing, feeding, toileting and mobility. They can also be appointed where a childs behaviour is such that they present a danger to themselves and others. SNAs are not qualified to provide educational support to pupils. SNAs are not personal assistants although they may work with one specific child. SNAs are a school based resource and the Principal allocates how much time each SNA spends with which child. SNAs may be shared between a couple of children who qualify for Access. SNAs help children to develop independent living skills where possible. SNA access may reduce overtime as a child develops self care skills. Applications for SNA support is made by the school Principal. Special Needs Parents Association 2014 General Allocation Model
The general allocation scheme is designed to ensure that all schools have enoughresource teaching hours to meet the immediate needs of pupils with high incidencespecial educational needs and those who require learning support. It reflects thefact that most schools would have children with these needs. What is are High Incidence Special Needs? Pupils below the 10th percentile on standardised tests of reading or mathematics. Pupils with learning difficulties, borderline mild general learning disability, mild generallearning disability and specific learning disability. Pupils with mild speech and language difficulties. Pupils with mild social or emotional difficulties. Pupils with mild co-ordination or attention control difficulties associated with identifiedconditions such as dyspraxia, ADD, ADHD Some children with a higher level of need will qualify for one to one Resource Hours. Special Needs Parents Association 2014 Resource Teaching Support
Low Incidence Disabilities Hours of resource teaching support available to school per week Physical Disability 3 Hearing Impairment 4 Visual Impairment 3.5 Emotional Disturbance Severe Emotional Disturbance 5 Moderate General Learning Disability Severe / Profound General Learning Disability Autism / Autistic Spectrum Disorders Specific Speech and Language Disorder Assessed syndrome in conjunction with one of the above low incidence disabilities 3 to 5, taking into account the pupils special educational needs including level of general learning disability Multiple Disabilities Resource Teaching Hours are allocated by a Special Educational Needs Organiser (SENO) on the basis of disability categories to children assessed as having a Low Incidence Disability and are generally delivered on a one to one basis. This is subject to a 15% individual reduction. Special Needs Parents Association 2014 new model of allocating teaching support
Why does it need tochange? What are the key recommendations for a newmodel? When will this happen? What does it mean for my child? Special Needs Parents Association 2014 Other Educational Supports
Visiting Teacher Service- The visiting teacher service provides support for children who aredeaf/hard of hearing and for children who are blind/visually impaired. Assistive Technology- Braille machines, software, adapted computer accessories, audiosystems etc.. Special School Transport- The purpose of the special transport scheme is tosupport thetransport to and from school of children with special educational needs arising from adiagnosed disability. Contact your SENO for eligibility. Bus escorts may also be sanctioned. Equipment- Special seating, adjustable desks, toilet adaptations. Irish Exemption- Where the exemption is sought on the grounds of a disability, the parentor guardian must supply reports from a qualified psychologist or from an appropriatemedical specialist. National Educational Psychology Service- are concerned with learning, behaviour, socialand emotional development & organised on a regional basis with psychologists beingassigned to a group of schools. Come back to assistive tech because of an important case taken by a parent which impacts on your children today. Special Needs Parents Association 2014 Assistive technology Provide grant aid to schools to purchase specialist equipment recommended bythe NCSE as being essential for pupils diagnosed as; Having a serious physical disability And/or sensory or communicative disability where ability to communicatethrough speech or writing is materially curtailed. Where existing equipment is insufficient without unduly depriving otherpupils Where without such equipment it will not be possiblefor such children toaccess the curriculum. 4 (D) Where it is clear from medical reports that child is suffering from a severemedical condition but indicate a diagnosis is difficult to obtain, the DES maymake an interim sanction for equipment where recommendedby NCSE pendingfull diagnosis. DoE Circular No 0010/2013 A statement based on an investigation regarding the refusal to provide anassistive technology grant to a child by the Department of Education andSkills Office of the Ombudsman for ChildrenMarch 2012 Aisling Hogan parent took a case to the Ombudsman for Children Emily Logan in relation to the Department of Educations refusal to fund Assistive Technology on the basis that he did not meet the criteria as he had no formal diagnosis at the time. Special Needs Parents Association 2014 Welfare Common Benefits & Entitlements Domiciliary Care Allowance
You are only entitled to apply for an allowance, not necessarily to be awarded an allowance Common Benefits & Entitlements Domiciliary Care Allowance Carers Allowance Carers Benefit Respite Care Grant Disability Allowance y to be awarded an allowance Special Needs Parents Association 2014 Domiciliary Care Allowance
Domiciliary Care Allowance (DCA) is a monthly payment to the carer of a child with a disability so severe that the child requires care and attention and/or supervision substantially in excess of another child of the same age. This care and attention must be provided to allow the child to deal with the activities of daily living. The child must be likely to require this level of care and attention for at least 12 months. Youre child does not have to have a diagnosis in order to apply. Handy Tip: Keep a diary of daily activities and care provided to support your application and provide as much evidence with your initial application as possible. Special Needs Parents Association 2014 Special Needs Parents Association 2014
Carers Allowance Carers Allowance is payment made by the Department of Social Protection for carerswho are looking after someone who is in need of support & of full-time care andattention because of age, physical or learning disability or illness, including mentalillness. It is a means tested payment. If your child is under the age of 16yr, you must qualify for DCA first. Carers Benefit Carers Benefit is a payment made to insured persons in Ireland who leave theworkforce to care for a person(s) in need of full-time care and attention. You can get Carers Benefit for a total period of 104 weeks for each person beingcared for. Once that period is over, you can apply for Carers Allowance if not returning to paidemployment. Special Needs Parents Association 2014 Special Needs Parents Association 2014
Respite Care Grant The Respite Care Grant is an annual payment for carers who look after certain peoplein need of full-time care and attention. The payment is made regardless of the carersmeans but issubject to certain conditions. You do not need to apply for the Respite Care Grant: if you, or anyone else, isgetting Carers Allowance (including half-rate Carers Allowance introduced inSeptember 2007), Carers Benefit, Domiciliary Care Allowance or PrescribedRelative Allowance for caring for this person, The Respite Care Grant is paid automatically to anyone getting these payments. One Respite Care Grant only is paid for each person needing full-time care andattention. The Grant payment is due in the first week of June & was reduced to1375 in thelast budget. Special Needs Parents Association 2014 Special Needs Parents Association 2014
Disability Allowance Disability Allowance is a weekly payment that you may get if you have an injury,disease or physical or mental disabilitythat is expected to last for at least one year,and you are aged 16 to 65. To get the payment, you must satisfy a means test and be habitually resident inIreland. Disability Allowance is paid directly to the applicant, not the parent. Start gathering reports at least six months prior to 16th birthday to send in withapplication. The age for eligibility for Disability Allowance may be due to change to 18 yearsin the future for new applicants. Children who qualify for DCA do not necessarily meet the criteria for DisabilityAllowance. Special Needs Parents Association 2014 Other Schemes & Supports Available
Disabled Drivers/Passenger Scheme Disability Parking Permit (Blue Card) Housing Adaptation Scheme (Means tested) Incapacitated Child Tax Credit (www.revenue.ie) Home Carers Tax Credit Medical Expenses Reimbursement (Meds 1 Form) Special Needs Parents Association 2014 Special Needs Parents Association 2014
Key Resources Special Needs Parents Association- National Council for Special Education - Dept. of Education- Dept. of Social Protection- Health Service Executive- Citizens Information Service - You will find most of the information covered today on our website, but we wanted to provide you with a brief idea of what is available. If you do not have access to the internet, call in to your local Citizens Information Centre for information. They are there to help. Special Needs Parents Association 2014 The accomplished traveller
Parents are not just the father or mother of a child. Overtime, they may havebecome carer, therapist, nurse, advocate, secretary, teacher, accountant,counsellor & expert in their childs condition.. Behind the label of Parent is a person oftentimes with a professionalbackground & experiences that should be valued by others and notdisregarded simply because they are just.a parent. Lorraine Dempsey Chairperson Special Needs Parents Association Special Needs Parents Association 2014 www.specialneedsparents.ie Please see our website for more information
Thank You Special Needs Parents Association 2014