Written Answers Nos. 805-824
806. Deputy Mark Ward asked the Minister for Health the financial support in place for persons with multiple sclerosis to obtain dual-control cars for medical and safety reasons; and if he will make a statement on the matter. [24067/20]
View answerThe Department of Health does not provide funding towards the cost of obtaining or adapting cars for people with disabilities.
However, tax relief is available towards the purchase of adapted vehicles for eligible drivers and passengers with disabilities under the Revenue Commissioners' Disabled Drivers and Passengers (Tax Concessions) Scheme.
This Scheme falls within the remit of the Minister for Finance.
807. Deputy Marc MacSharry asked the Minister for Health if myalgic encephalomyelitis (details supplied) is accepted as an illness which can lead to disability; if a person with the condition can expect his or her application for support to be processed by the disability service in a CHO; his views as to whether processing such an application under older persons is discriminatory; the code now assigned to the condition to ensure that the current criteria for disability services are made public in view of recent changes to the National Ability Supports System; and if he will make a statement on the matter. [24068/20]
View answer809. Deputy Marc MacSharry asked the Minister for Health if he is satisfied that the data collected by his Department, the National Ability Supports System and the HSE in respect of those living with myalgic encephalomyelitis (details supplied) and used as a data set to support the decision-making process in respect of the supports and services needed in acute and community care and to inform key performance indicators are accurate and representative of the 0.2% to 0.4% population prevalence of persons with the condition in adults and children across all severities of mild, moderate, severe and very severe; and if he will make a statement on the matter. [24070/20]
View answer811. Deputy Marc MacSharry asked the Minister for Health the way in which the HSE fulfils the commitment of the national healthcare charter in respect of persons living with myalgic encephalomyelitis (details supplied) in view of the experience of those living with the condition who meet staff across the spectrum of health services whose training either pre or post qualification does not include the condition; and if he will make a statement on the matter. [24072/20]
View answer812. Deputy Marc MacSharry asked the Minister for Health if he will direct the HSE to identify a paediatric and adult champion for myalgic encephalomyelitis (details supplied) in each hospital group and CHO; and if he will make a statement on the matter. [24073/20]
View answer813. Deputy Marc MacSharry asked the Minister for Health if he is satisfied that the HSE is adequately fulfilling the standard of quality healthcare committed to in view of records from a freedom of information request (details supplied) which indicate that there is no home or ownership of myalgic encephalomyelitis in the clinical operations of the HSE; if he will direct the HSE to identify individual healthcare staff with a particular interest in ME as referred to in the freedom of information records; and if he will make a statement on the matter. [24074/20]
View answer814. Deputy Marc MacSharry asked the Minister for Health the diagnostic criteria the HSE and Children's Health Ireland used consistently in adult services and paediatric services to elicit a differential diagnosis of myalgic encephalomyelitis (details supplied); if the HSE and Children's Health Ireland have not currently instructed staff to follow a specific set of diagnostic criteria, if he will instruct them to adopt the international consensus criteria 2011, the 2012 primer for adults and the paediatric primer published by Rowe et. al. in 2017 until the work of the national HSE ME working group has been completed and adopted in practice; and if he will make a statement on the matter. [24075/20]
View answer816. Deputy Marc MacSharry asked the Minister for Health the reason Children's Health Ireland chooses to use the term CFS rather than myalgic encephalomyelitis (details supplied); the decision-making process which resulted in this decision; the WHO classification associated with the term; and if he will make a statement on the matter. [24077/20]
View answer817. Deputy Marc MacSharry asked the Minister for Health if he will ascertain if a HSE service or member of staff recommends graded exercise therapy and cognitive behavioural therapy as treatments for adults with myalgic encephalomyelitis; his views on the risk of harm to those subjected to these treatments in view of findings (details supplied); and if he will make a statement on the matter. [24078/20]
View answer820. Deputy Marc MacSharry asked the Minister for Health the reason the knowledge relating to research into myalgic encephalomyelitis, the physiological presentation and treatment and management options is held by those living with ME and not by an identifiable HSE or children's health expert or responsible group that can be approached for informed guidance and support, supported by biomedical research; if he will consider the impact on those who have limited function in their lives due to ME who are using that limited function to bring change; the reason this situation has not been addressed in view of the repeated signalling that those with ME are inadequately served by the health services; and if he will make a statement on the matter. [24082/20]
View answer822. Deputy Marc MacSharry asked the Minister for Health the action taken to gain an understanding of the impact of the poor knowledge among healthcare providers of myalgic encephalomyelitison on persons living with the condition in view of a recent EU ruling (details supplied); the data currently available; the funding provided for same by the HSE, the HRB and other public bodies; and if he will make a statement on the matter. [24084/20]
View answer823. Deputy Marc MacSharry asked the Minister for Health the funding the State, the HSE and the HRB have provided since 1 January 2015 for research into myalgic encephalomyelitis, that is, biomedical and socio-economic research and research into the experience of those living with ME and disability related to ME in view of a recent EU ruling (details supplied); his plans to address the resolution; and if he will make a statement on the matter. [24085/20]
View answer824. Deputy Marc MacSharry asked the Minister for Health the data available on disability related to myalgic encephalomyelitis in view of a recent EU ruling (details supplied); the action taken to gain an understanding of the impact the poor knowledge of the condition among healthcare providers has had on the understanding of and provision for the level of disability of persons living with myalgic encephalomyelitis by the HSE, the HRB and other public bodies; and if he will make a statement on the matter. [24086/20]
View answerI propose to take Questions Nos. 807, 809, 811 to 814, inclusive, 816, 817, 820 and 822 to 824, inclusive, together.
There are over 22,000 people registered on the National Ability Support System (NASS) and of those less than five have a diagnosis of ME. The NASS is not intended to be epidemiological and therefore will not give a count of the people living with ME. The current level of registration simply reflects the number of people with ME who are availing of or who need HSE funded disability services.
NASS differs slightly from the National Physical and Sensory Database in that the NPSDD used a 'version' of the ICD-10 whereas NASS now uses codes as per the ICD-10, so Myalgic Encephalomyelitis (ME) will now be coded as G93.3.
The National Ability Support System has just completed its first round of reporting which covers the period for 2019. A data request can now be made from the system using a form available on the HRB website:
https://www.hrb.ie/data-collections-evidence/disability-service-use-and-need/request-data/
As these are service matters, I have asked the Health Service Executive and Health Research Board, as appropriate, to respond to the Deputy directly, as soon as possible.
808. Deputy Marc MacSharry asked the Minister for Health if the disability section of the HSE website will be updated to provide more detailed information on management and supports to include policies or guidance relating to disability services for those living independently in their own homes and provide links to accessible information in plain and easy English versions which describe each specific service; and if he will make a statement on the matter. [24069/20]
View answerThe Government is committed to providing services and supports for people with disabilities which will empower them to live independent lives, provide greater independence in accessing the services they choose, and enhance their ability to tailor the supports required to meet their needs and plan their lives.
As this is a service matter, I have asked the Health Service Executive to respond to the deputy directly, as soon as possible.
810. Deputy Marc MacSharry asked the Minister for Health if the disability inclusion strategy 2016-21 is fully inclusive and representative of the issues faced by those in the 18 to 65 years of age demographic who have acquired a disability and live in their own homes in view of the recommendation of the Culliton and O'Malley report of July 2018 (details supplied); and if he will make a statement on the matter. [24071/20]
View answerTo support people with a disability, significant resources have been invested by the health sector in disability services over the past number of years. HSE specialist disability services focus on enabling people with disabilities to achieve their full potential. This is about living ordinary lives in ordinary places, as independently as possible, while ensuring that the voices of service users and their families are heard, and that they are fully involved in planning and improving services to meet their needs.
The majority of people with a disability live in their family home, with a proportion of people in receipt of specialist disability services residing in long term residential care facilities. Those living in the family home or their own home are supported through a range of service provision, including adult day services, personal assistance and home support Hours and respite services. Supports are provided by the HSE either directly or through partner organisations, prioritised according to need and within the resources available.
Responsibility for the National Disability and Inclusion Strategy currently lies with the Department of Justice and Equality, and that function is in the process of transferring to the come under the remit of my colleague, the Minister for Children, Disability, Equality and Integration.
I am informed that the Department of Justice and Equality is seeking to develop a consultation and participation model within the context of the Strategy in line with the obligations that arise under the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD),in partnership with relevant stakeholders. A key part of this will be to increase capacity for consultation with people with disabilities and establish improved mechanisms and support to enable these consultations.
Ireland ratified the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) in March 2018. The Convention imposes obligations on the State to ensure effective consultation with and participation by persons with Disabilities. Specifically Articles 4 and 5 require States Parties to ‘closely consult and actively involve persons with disabilities, including children with disabilities’ in the development and implementation of legislation and policies concerning persons with disabilities.
The Optional Protocol to the United Nations Convention on the Rights of Persons with Disabilities (CRPD) is an international treaty that establishes two procedures aimed at strengthening the implementation and monitoring of the Convention. The first is an individual communications procedure allowing individuals to bring petitions to the Committee claiming breaches of their rights; the second is an inquiry procedure giving the Committee authority to undertake inquiries of grave or systematic violations of the Convention.
The Programme for Government reiterates the commitment to ratify the Optional Protocol after the first reporting cycle. The Government priorities remain focused on addressing the remaining legislative measures to be taken to give full effect to the Convention.
Other priorities are the submission of the CRPD Initial State Report and developing an implementation plan to coordinate implementation of the UNCRPD.
