An Unexpected Journey Navigating the System
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Transcript of An Unexpected Journey Navigating the System
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