Impact of Legislation on Charging for Long-Stay Care for Intellectually Disabled

1. Daughters of Charity Service for Persons with Intellectual Disability Long Stay Charges Walter Freyne on behalf of National Federation of Voluntary Bodies

2. Background and current situation

3. Daughters of Charity Service for Persons with Intellectual Disability Background • Following legal advice in 2004 the DOHC issued a direction to cease all such charges • While the context in which it was originally raised was around nursing home care and possession of pension books etc when the direction was issued, it covered all long stay residential situations

4. Daughters of Charity Service for Persons with Intellectual Disability Quote from letter issued to all Health Board and Chief Executive Officers Categories of Institution the Secretary general of the DOHC – in a letter of 9 Dec 2004 stated: “With effect from the date of this letter Health Boards should cease to impose any financial charge on fully eligible persons who are in receipt of inpatient care” This resulted in some queries for clarification and that clarification came in a letter from the Assistant Secretary on 23 Dec as follows: “All long term residential facilities run by Health Boards or by voluntary agencies on behalf of Health Boards.. and it goes on to specify .. “those with an intellectual disability in independent settings, community group homes, residential centres …in summary – any long term residential facility where a charge has been imposed.. including respite”

5. Impact for service providers • Loss of income that had been a normal part of annual revenue required to deliver services.

6. Result? • Legislation brought forward to make these charges legal and an attempt was made to make such charges legal for the future but also to make them retrospectively legal. • This Bill failed having been referred to the supreme court - the bill failed on the retrospection element and consequently it failed in its totality

7. Daughters of Charity Service for Persons with Intellectual Disability Consequently- What happened? • New legislation brought forward [Health (Amendment) Act 2005, which made these charges legal and also made provision for the relevant minister to make regulation regard the implementation of such charges. • These regulations came in the form of S.I. 276/2005

8. Expert Group In July 2005 a decision was made to set up an expert group under an Independent Chairman to develop a set of national guidelines to deal with the implementation of the legislation and the regulations. The terms of reference for the expert group are as follows: • Phase I To develop guidelines within a two week period sufficient to meet the immediate requirements in implementing the regulations from the 14th July 2005. This Phase was completed rapidly and Interim Guidelines were issued • Phase IITo develop a more comprehensive set of guidelines in line with best practice, having considered legal opinion and its implications. Phase II was completed 20 Aug 2006 and the revised guidelines were issued. These guidelines were approved by Director of Primary Community and Continuing Care.

9. Charges set out are as follows: Class 1 Class 1 refers to people in receipt of in-patient services on premises where nursing care is provided on a 24 hour basis on those premises. In this case, a weekly charge of €120 can be levied or the total weekly income of that person less €35, whichever is the lesser. Class 2 Class 2 refers to people in receipt of in-patient services on premises where nursing care is not provided on a 24 hour basis on those premises. In this situation, a weekly charge of €90 can be levied, the total weekly income of that person less €55 or 60% of the weekly income of that person, whichever is the lesser.

10. Charges The regulations instruct that charges should now be raised with effect from 1st July 2006 based on a financial assessment of each client. Arrears should be calculated from 14th July 2005 and advised to the client. Each client should be given the following options: Pay any arrears in full or in installments or Deduct the arrears from any monies due under the repayment scheme, if applicable.

11. Patient’s Private Property Accounts • The HSE, in the expectation that some patients/service users would now have substantial amounts of money due to them in refunds, set about providing for the management of these funds in some standardised way, through setting out guidelines. • These guidelines set out some do’s and don’ts and and generally stipulates what these private funds may be used for. • Each service provider is obliged to put in place control systems for the management of individual accounts and these provided for receipted expenditure of all monies • The reality is that many service providers were already handling service user’s funds and had systems in place albeit that they may have needed some minor adjustment to align them with procedures / protocols set out in the new guidelines.

12. Provision of Disability Allowance to all • There had been ongoing issue about inequality within the system in that not all residents were in receipt of the full Disability Allowance. • From Jan 05 those who had no allowance were granted the pocket money allowance of €35 per week • For years the case for equality was made and eventually in Jan 06 the playing pitch was levelled and all residents were granted Disability Allowance.

13. Legal Position • HSE empowered to make charges under the Act • Section 38 agencies who, deliver services for and on behalf of the HSE, derive their authority from that section of the act as interpreted by Senior Counsel to expert group • This is new income ( i.e. income relating to residents who were not charged prior to Dec 2004) is a matter for the HSE to direct agencies as to they want it used. Service providers are merely agents of the HSE in collecting this charge. In some cases agencies have been directed to use it on specific projects relating to enhancement of older services • Disability Allowance belongs to the person with the disability and there needs to be clarity between the service provider and the family regarding the charge and the management of the remainder which in most cases is the full extent of the Patient’s Private Property Account.

14. Legal Opinion (S McNulty slide) • Is nursing care a pre-condition to the right to charge under the regulations? • “On balance, the regulations did not envisage the imposition of charges where no nursing care was provided”

15. Legal Opinion (S McNulty slide) • “The Health Acts have consistently recognised that services to be provided by health boards/HSE may be provided by other bodies” • “If such bodies are providing services on behalf of HSE, they cannot impose charges for that service if the HSE could not impose charges (Section 38)” • “If they are not providing services on behalf of HSE, they are entitled to impose such charges as they see fit (Section 39)” • “Voluntary Agencies are free to impose whatever charges they wish unless they are carrying out functions for and on behalf of HSE”

16. For service providers • There may be new inequalities now being created relating to various types of group homes • It is the opinion of the National Federation of Voluntary Bodies that amending legislation that gets us away from the nursing home definitions is required to address this • This matter has been put to the Minister back in Feb of 2007

17. Eligibility under the National refund Scheme • If charges were being made in accordance with Sec 26 of the Health Act 1970 • If the service delivered was similar to the service delivered to those who did not pay a charge This is ongoing work and where above situation pertained it is my interpretation that a refund entitlement exits. However, the task of the Service provider is to make the application – it is the task of the company employed the Department of Health and Children to administer the scheme to make the determination.

18. Questions?? Thank you