District Court orders Child and Family Agency to fund home adaptations and two-thirds of alternative rental for child with DMD.

[2022] IEDC 1 Z 1532/2015 AN CHUIRT DUICHE THE DISTRICT COURT

In the matter of AB, a child In the matter of the Child Care Act 1991

CD AND EF (FOSTER CARERS)

APPLICANTS -AND-

THE CHILD AND FAMILY AGENCY

-AND-

GH AND IJ (BIRTH PARENTS)

RESPONDENTS

-AND-

KL GUARDIAN AD LITEM

Decision of Judge Simms dated the 14th day of June, 2022

1. The applications before the Court relate to AB, at this time aged six years and nine months. AB has been in care of the Child and Family Agency since three days after his birth and subject to a Care Order pursuant to S. 18 (2) of the 1991 Act made March 2018. AB has a Court appointed guardian, KL. AB has a rare and life limiting diagnosis of Duchenne Muscular Dystrophy (DMD) characterised by progressive muscle degeneration and debilitating conditions, including, at the present time, delayed motor and speech development, fatigue, loss of mobility, being prone to trips and falls, difficulty swallowing with a risk of aspirations and, in the future, likely further loss of mobility requiring use of a power driven wheelchair, hoist and additional overnight care presence in the house.

2. The Applicants are CD and EF, AB’s foster carers with whom he has been placed since he was in or about three days old. The Respondents are the Child and Family Agency, who have responsibility for AB pursuant to the provisions of the Child Care Acts.

3. There are two applications before the Court for determination. The first is dated 30 th April 2021. In summary, the principal direction sought is that the CFA be directed to arrange and fund necessary adaptations to the home of the Applicants to facilitate AB reaching is full potential having regard to his diagnosed disability.

4. The second application seeks that the CFA be directed to fund appropriate alternative accommodation within the current locality of the Applicants for the Applicants, AB and the Applicants’ other foster child for the duration of the necessary adaptations to the Applicants’ home.

5. The applications for directions are brought pursuant to S. 47 of the Child Care Act 1991.

The Court has to consider S. 24 of the Act and the imperative of Article 42A of the Constitution “that the best interest of the child shall be paramount consideration” and “reach a conclusion based on the welfare of the child above all other considerations”

(O’Malley J. HSE v O.A., [2013] IEHC 172 as referred to in the Judgment of Baker J. in V.Q. v CFA [2016] IEHC 631.

6. The CFA accepts that the scope of the directions sought fall within the welfare principles referred to in the case of V.Q. v CFA [2016] IEHC 631.

7. The CFA and AB’s Guardian acknowledge the extraordinary commitment to and care of AB by the Applicants. Adrienne Byrne, Principal Social Worker, states in her Replying Affidavit sworn 2 nd June 2021 at paragraph 4 “I say that [AB] has been placed with the first and second named Applicants since the 27 th August 2015 and he has been in receipt of an exceptionally high level of care and commitment from the Applicants since that time. This is the only family he has ever lived with and he is a fully integrated member of the [foster] family”.

8. A number of reports, pleadings, drawings, costings etc. filed in the proceedings have been considered.

9. The Court heard the following evidence:-

For the Applicants:

CD, Applicant;

AM, Occupational Therapist;

JS, Quantity Surveyor;

JO, Architect;

For the Respondents:

MT, Occupational Therapist.

On behalf of AB:

KL, Guardian Ad Litem.

10. The case was part heard on 28th July 2021 when AM outlined his experience of children with a DMD diagnosis and the difficulties which needed to be addressed in providing a safe and nurturing environment for children with the diagnosis generally and AB in particular. Cross examination was left to an adjourned date.

11. The Court also heard evidence from the Applicant, CD, setting out the history of engagement with the Agency and the increasingly pressing necessity of making alterations to the house to accommodate AB’s escalating needs and, at the present time, his having to negotiate the stairs by manoeuvring himself up and down, described by Ms. Troy as “crawling up the stairs and bum shuffling down”.

12. The Court made certain directions in relation to production of plans, drawings, costings to be exchanged between the parties and the matter was adjourned from time to time until 3rd December 2021 when the Court made an Order on consent directing under S.

47 “that the Child and Family Agency be directed to arrange and fund the necessary adaptations to the house of the Applicants to facilitate the above named child [AB] reaching his full potential having regard to his diagnosed disability. The Court receives the terms and conditions set out in the letter dated 3rd December 2021 from [the CFA solicitors] Solicitors to the Applicants, a copy of which is appended hereto.”

13. The letter from The CFA solicitors included, inter alia, a confirmation that the agency was willing to pay for the necessary adaptations under S. 14 (2) of the Child Care (Placement of Children in Foster Care) Regulations, 1995. It also included, at paragraph 3, a brief description of the scope of the works “the agency’s starting budget for the works is €258,221 at September 2021 building costs. It is agreed that the necessary adaptations to meet the child’s needs include (a) an accessible bedroom (b)

an accessible bathroom (c) sufficient storage for wheelchair and ancillary equipment (d)

door widening where required (e) wheelchair accessible access at front and rear of the house. It is acknowledged that the budget of €258,221 does not include the necessary storage or rear wheelchair access. It is acknowledged that equipment (ceiling hoist, changing table etc.) constitutes separate expenditure to the adaptations and that the agency has reached an agreement with the Health Service Executive that the HSE will fund the necessary equipment.”

14. The scope of the works and costings were predicated on a Scheme prepared for the CFA by Alternate Architects on drawings dated 1st September 2021 and the works costed by Quantity Surveyor, Andrew Nugent dated 9th September 2021. This Scheme proposed that the accommodation would be in the form of an extension to the rear of the house in the nature of an “add on facility” (“the CFA/Alternate Architects Proposal”).

Ultimately, the CFA did not seek to advance this proposal.

15. The remainder of the reliefs sought were adjourned to 2 nd February 2022. The Court was told that a further adjournment was required to enable the parties update the Court on the building work and it was mentioned that there was a question of rental of alternative accommodation. The matter was adjourned from time to time and on 23 rd March 2022 the Court was advised there were issues as to the extent of the plan and that the issue of rental of alternate property had to be considered. The matter came before the Court on 6th May 2022 when the Court directed that the parties prepare and exchange an Issue Paper and gave liberty to disclose documents as necessary to the Health Service Executive (“HSE”) for the purpose of inviting them to consider their obligations to AB and resolve the question of whether they should be joined as a notice party.

16. On 27th May 2022 the Court was asked to determine the matters set out in the parties’ agreed Issue Paper, as follows:-

“Background

On 3rd December 2021 the Court made consent orders pursuant to Section 47 directing the CFA to provide for necessary adaptations to the Applicants’ home to facilitate AB’s increased reliance on a wheelchair. The consent terms contained a list of items to be included in those necessary adaptations. The parties agreed the said consent terms following lengthy discussions.

The Applicants do not accept that this was a final closed list. The Applicants’ position is that the totality of what are “necessary adaptations” were to be finalised in discussions between the Architect and the HSE Occupational Therapist (OT), [MT] in January 2022. The CFA does not accept this position.

The Applicants and the CFA disagree fundamentally on the purpose of the meeting between the Architect and the OT.

The parties have been unable to reach agreement as to the extent of the necessary works that fall within the existing order.

A separate S. 47 Application has been issued by the foster carers in respect of the costs of alternative accommodation while the necessary works to the foster carers’ home are carried out.

Issues

The parties are seeking a ruling from the Court on the following issues:

1. Have the Applicants resiled from the Agreement they made with the Respondents on 3rd December 2021 which are part of the S. 47 Order made on that day?

2. If so, what implications does that have for the S. 47 Order which was made on consent on 3rd December 2021?

3. What are the “necessary adaptations” required to the home of the Applicants to permit the child AB to continue to reside there?

4. Is a family room (separate from an open plan kitchen dining area)

necessary in the best welfare interests of AB?

5. Is an additional room for AB’s main use (separate from his bedroom, a family room and separate from an open plan kitchen dining area)

necessary in the best welfare interests of AB?

6. Is it necessary in the best welfare interests of AB that the CFA fund alternative rental accommodation for them and the foster carers during the construction works on the foster carers’ home?

Position of the Parties on the Issues

The Applicants’ position is that the answer to Question 1 is “no”. As regards Question 2, the Applicants’ position is that, even if the Court were to take the view that there had been a resiling from the Agreement (which is denied) the nature of the Court’s S. 47 welfare jurisdiction is such that the Questions 3 – 6 would still remain to be determined by the Court. The Applicants’ position is that the answers to Questions 4, 5 and 6 is “yes”.

The CFA’s position is that on 3rd December 2021, agreement was reached between the parties as to what were the necessary adaptations and the CFA are willing to pay for the necessary adaptations agreed on 3rd December.

The Guardian’s primary concern is that whatever works are necessary are carried out as soon as possible in AB’s best interests”.

17. In the period between the 3rd December 2021 and 27th May 2022 JO, Architect, designed Schemes, two of which were presented to the Court, both dated January 2022. Scheme C provided a reconfiguration of the Ground Floor of the house with a conversion of the adjoining garage and addition of a family room. Scheme E also provided a reconfiguration of the house with addition of a family room but without conversion of the adjoining garage. JS, Quantity Surveyor, gave evidence that Scheme

C, including professional fees, VAT and contingencies at current building costs would amount to approx. €610K, while Scheme E, also including professional fees, VAT and contingencies, would be of the order of €525K, a difference of just under 16.5%.

THE ISSUES

18.Issue 1 – Have the Applicants Resiled from the Agreement they made with the Respondents on 3rd December 2021 which are part of the S. 47 Order made on that day?

19. The Agreement provided for a starting budget of €258,221 and that necessary adaptations included those mentioned.

20. Clauses 6, 7 and 9 provided that the project would be managed and overseen by he Applicants’ Architect and Quantity Surveyor, with the Applicants entering a detailed and comprehensive Building Agreement with a contractor. Amendment to the project to be approved in advance between the Applicants and the CFA.

21. Clause 8 provided for maintaining budget constraints and permissible and impermissible cost overruns. This Clause never became operative because it could only take effect on the adoption of a Scheme and the existence of a fully costed Building Agreement.

22. It was submitted to the Court by Counsel for the CFA that following the Agreement of 3rd December 2021, the Applicants were asked by the CFA to instruct their Architect to prepare and supply a set of drawings reflective or within the parameters of the Agreement. The Court heard evidence that possible Schemes were considered, including an adaptation of the upstairs of the house and installation of a lift on consensus this was rejected for a number of reasons, including significant ongoing lift maintenance cost. Drawings of the other Schemes are contained in the Book of Documents filed.

23. Two of the possible Schemes prepared by the Applicants’ Architect were presented to the Court – Schemes E and C. Both of the Schemes envisage a complete reconfiguration of the ground floor of the house and the CFA concede that Scheme E (excluding a family room at the rear) falls within the parameters of the December 2021 Agreement.

24. The Court was not apprised of what other Schemes were considered but, on the evidence, at the very least the Scheme previously referred to was rejected. That the Agency accepts that reconfiguration of the ground floor of the house is necessary, added to the Agency’s invitation to have the Applicants’ Architects prepare the drawings and that the CFA were not seeking to advance the CFA/Alternate Architects Proposal,

adds considerable weight to the view that the December 2021 Agreement was a starting point or a demonstration of good faith necessitating further exploration, rather than the parties entering into a specific binding contractual commitment.

25. For those reasons the Court finds that the Applicants did not resile from the Agreement, rather they sought to advance matters and did so by providing sets of drawings and costings.

26. Issue 2 is therefore moot.

27.Issue 3 – What are the necessary adaptations required to the home of the Applicants to permit the child AB to continue to reside there?

28. While the CFA did not seek to advance the Alternate Architects’ proposal, evidence was given which sheds light on why this proposal might have been considered unsuitable in the circumstances of this case.

29. The Court heard evidence from AM, Occupational Therapist, that his principal objections to providing the accommodation in an extension at the rear was that AB would be (and would feel that he was) very remote from his carers, the access route through the rest of the house would be difficult to navigate even with modification and the provision of suitable storage would require consideration.

30. JO expressed fire safety concerns for AB’s safe evacuation in the event of a fire occurring in the high risk kitchen area.

31. MT, in her evidence, said that if the accommodation was at the rear of the house “it wouldn’t be a deal breaker for me” and that the communication issue might be resolved by the use of technology.

32. The CFA’s position is that Scheme E, without the family room, would constitute the “necessary adaptations” and the Applicants’ position is that Scheme E in its entirety (including the family room) would be the minimum necessary adaptation to permit AB to reside in the house.

33. MT, in her evidence, said that her role in the HSE was to look at what is absolutely essential, focusing on function. She was not so concerned about the location of a bedroom within the house, but rather its size and what it should contain. In this instance she was recommending a double bedroom. Access to an outdoor environment was important for wellbeing.

34. The CFA’s position adopts the HSE’s criteria of what is absolutely essential for AB and his mobility. The analysis does not take account of the needs of the carers and their other child, as referred to by AM. The adoption of Scheme E necessitates the complete reconfiguration of the ground floor of the house with the loss of communal living space (two living rooms) and a requirement that the kitchen be moved in its entirety into the existing family room extension, resulting in it being the only communal living space available for cooking, dining, watching television and all other daily family activities.

35. The Court finds that no reasonable person could expect a family to adequately function with such loss of communal amenity space, let alone care for a growing child increasingly dependent on incrementally larger mechanical equipment and therefore the family room proposed in Scheme E to provide for the loss of communal living space is a necessary adaptation to allow the family to continue to function 24/7, 365 where care is provided to AB as part of a functioning family (as opposed to being provided by a series of care givers who come and go from home to a place of work and have the benefit of the Organisation of Working Time Act). For this reason, the inclusion of the family room forms part of the necessary adaptations in the best welfare interests of AB.

36. Issue 4 is therefore moot.

37. Before moving to Issue 5, the Court considers that AB’s best interest must encompass him having the opportunity to reach his full potential.

38.Issue 5 – Is an additional room for AB’s main use (separate from his bedroom, a family room and separate room an open plan kitchen dining area) necessary in the best welfare interests of AB?

39. MT, when asked if the provision of an additional room for AB’s use, as shown in Scheme C, stated “the proposal is lovely but not essential”. AM, in his evidence, accepted that the room could not be considered to be immediately essential, but in his view would be desirable on welfare grounds in seeking to facilitate AB reaching his full potential. The reasons which he outlined are referred to later.

40. MT, in her Report dated 12th October 2021 in a paragraph under the heading “Review of Recent Literature and Best Practice Guidelines” makes reference “In 2018, the Lancet Neurology published 3 papers as an update to the 2010 Duchenne Muscular Dystrophy (DMD) Care Considerations. The updates were created due to the fact that “with multidisciplinary care, the survival of patients with DMD has improved and there is “an increasing emphasis on quality of life and psychosocial management. Moreover, an urgent need now exists to coordinate and improve patient transitions from childhood to adulthood” (Birnkrant et al, 2018). Please refer to these papers for more information.

41. The papers, which contain an extensive care analysis of DMD, are available on the internet. An excerpt from the introduction to the third part of the paper reads:-

“Part 3: Primary Care, Emergency Management, Psychosocial Care and Transitions of Care Across the Lifespan

Many individuals with DMD are now living into their 30s and beyond. With prolonged survival, an entirely new set of issues needs to be addressed with regard to mental health, psychosocial care and transitions to adulthood. These issue cover some of the basic components of human fulfilment and happiness and span the domains of education, vocation, maturation, independence, personal relationships, emotional health and intimacy. The importance of these issues reflects a fundamental change in DMD care: recognition that in addition to increasing longevity, helping individuals to achieve their best possible quality of life is an essential part of healthcare”.

42. AM, in his evidence, spoke to this all-encompassing quality of life aspect of AB’s welfare. AM, who has experience of other children with a DMD diagnosis, told the Court of AB’s current abilities, difficulties, strengths and frustrations and how his likely development would be impacted by his living environment. Many aspects were common case – the bedroom/bathroom, reliance on a wheelchair, necessity for physical aids. He referred to the likely need for undergoing therapies in the home necessitating a therapeutic space, the possibilities that AB may need additional carers to live in the home, the increase in size and complexity of equipment as AB grows.

43. AM explained that AB can become frustrated when dealing with mobility difficulty and speech impairment. Management of this requires “chilling out”. As AB loses mobility, so too he loses the opportunity to go on outings with his friends or to their homes simply because he can’t physically be accommodated in those homes (there is reference to the extensive guidelines of The Irish Wheelchair Association), that he needs space separate to his bedroom where he can go to “chill out” and to socialise by having friends over, some of whom may have a similar diagnosis to himself. The Scheme and room would provide direct access to his back garden (AB has an interest in gardening). The room would provide him with a place to study, pursue his hobbies and the potential of a space for working from home when he is older.

44. Aside from the provision of an extra room – AB’s room Scheme E made adequate storage provision for equipment. AM makes the case for the room which references the psychosocial aspects and transitions of AB’s ongoing development, and not just focusing on physical function. He also addressed the impact of AB’s care on his carers,

This too is referred to in the Lancet papers and MT’s Report “caring for a child with DMD commonly leads to caregiver fatigue, both physically and emotionally”. The Guardian ad Litem, in his evidence also echoed his concerns and mentioned more specifically the stresses on the Applicants of the adversarial nature of the ongoing Court applications and his strongly held view that the matter needed to be brought to finality in AB’s, and indeed everybody’s interest.

45. Referring again to the consent S. 47 direction “that the CFA be directed to arrange and fund the necessary adaptations to the house of the Applicants to facilitate the above named child (AB) reaching his full potential having regard to the diagnosed disability”.

46. Having considered the evidence, the “whole of the child” centred approach as advocated by AM and in line with current academic understanding in the Lancet papers referred to by MT, for those reasons the Court is satisfied that the imperative of S. 24 of the Act, Article 42A of the Constitution and the welfare principle as set out by Baker

J. in V.Q. v CFA, can only be achieved by the provision of a separate room for AB,

47.Issue 6 – Is it Necessary in the Best Welfare Interest of AB that the CFA Fund Alternative Rental Accommodation for them and the Foster Carers During the Construction works on the Foster Carers’ Home?

48. The proposed works to adapt the Applicants’ home is a very big commitment by them and the CFA – the Applicants commit their home and the CFA commits the funding.

The Agency proposes that the rental costs should be borne equally - a further commitment by both parties. This would seem to be an equitable proposal save the Court is aware and acknowledges that at this time rents are in economic terms “super normal” and in those circumstances the Court is satisfied the agency should pay twothirds and the Applicants one-third of the cost of provision of alternative accommodation where the principles of economics guide that parties make optimal choices by deriving the maximum marginal utility out of the allocation of scarce resources available to them.

Dermot Simms.