level of understanding of residents within the hse north east residential intellectual disability...

Level of understanding of residents within the HSE North East residential intellectual disability services of the underlying principles of the National Standards for Residential Services

for Children and Adults with Disabilities (2013)

A little bit of background

Commissioned by the regional Nursing Midwifery Planning and Development Unit (NMPDU) and HSE North East Disability Services.

Funded through the HSE NMPDU North East Research and Innovation funding initiative.

Steering Committee

Deirdre Mulligan Chair NMPDU DNE Jackie Barron Disability Services Manager Louth Vanessa Clarke Project Officer NMPDU DNE Dermot Courtney ADoN Disability Services Monaghan Dr Myles Hackett HoD DkIT Dr Edel Healy HoS DkIT Anne Melly Disability Services HSE DNE Georgina Morrow Quality and Performance Manager Joe Treacy Programme Director DKIT Liz Warters Disability Co-ordinator Meath

Two Standards in One

Themes within the Two Standards

Principles informing the Standards for Adults

1. Provide the care and support to promote autonomy and an excellent quality of life for people living in the service.

2. Promote a person-centred approach to service provision that meets the needs of each person.

3. Safeguard and protect each person.

4. Uphold and promote the equal rights of adults with disabilities.

5. Promote the health and development of each person.

6. Promote integration within the community and the development of social networks.

7. Provide effective governance arrangements with clear leadership, management and lines of accountability.

8. Plan and use resources effectively.

9. Deliver responsive and consistent services based on evidence and good practice

18 residential homes

107 residents

11 homes used for data collected

46 research participants

5 homes18 residents

1 home2 residents

1 home8 residents

4 homes18 residents

Promote autonomy and an excellent quality of life

“its my home” (N 31)

“It’s ok living here – I had no other place to go to” (N 39)

“I like living here I have my dolly” (N 10)

“Like a cup of tea in bed in the morning and listen to music” (N 34)

“like to wear different perfumes” (N 14)

“If I want to play county and western music in my room I can it’s my choice” (N 18)

Physically

“Love my room … it’s a big room and has a shower and all” (N 45)

“changed rooms … nicer room” (N 14)

“it’s easy to come home from town” (N 40)

“Like sharing with (name of resident) wouldn’t like a room on my own” (N24)

“I would like a bath but there is no bath in the house” (N 23)

Autonomy “Spend time watching telly together”, have

fun with the lads” (N 13)

“We have one day off a week when we can stay in bed” (N 19)

"I could stay here or at home” (N 32)

“Don’t go home now for a sleep over don’t want to, prefer to stay here” (N27)

“Living here for about 10 years was sick at home and felt that I was leaving too much for mam and dad to do” (N 9).

Family influence “Mom thought it was time for me to move

out and mix with people my own age” (N21)

“Moved in here with mammy died; it had some serious consequences” (N 43)

“You have to live someplace but if I was rolling in money I would not be here” (N 3).

Person-centred approach

“If I want to know anything I read it in my book, my big book it’s all about me”, (N 29)

“Yeah it has my pictures in it”, “My sister comes in to talk to me about it” (N 7)

“The big black folder in the office with all my stuff” (N 1)

“Yeah we talk about it now and again” (N 10).

“It’s in one of them drawers there but I don’t bother with it … but I know what’s in it” (N 33)

“Never bother to look at it (PCP) but I know what is in it, you know … I know what’s discussed at meetings” (N 3)

Choice of activities

“Like to go to cinema, don’t know the last time I was there, I get bored at it” (N 2)

“Going to Knock in September” (N 29)

“I got a massage on my back and went for a swim” (N 8)

“I buy my own clothes... I’m big into my shopping... buying clothes mostly” (N 10)

“We go out and about … we went to dinner in the hotel”. (N 35)

“Nobody makes up your mind you make that up yourself” (N40)

Staff influence

“Staff might tell you … to clean yourself up or have a shower” (N 30)

“Staff make plans – go the pictures” (N 15)

“Staff tell us we are going out” (N 21)

“Sometimes I get upset about mam and dad... and tell staff so we go to mass for them”. (N 5)

Staff limitations

“Might not get to the Arch club if there is not enough staff” (N 35)

“Sometimes go down (town) on my own if not enough staff here ... they have to stay here” (N 3).

Expectation from staff

“Keyworkers do all the cleaning for us wash our clothes and that” (N 32)

“We pay the staff to keep the house in order” (N 40)

“Staff wash the clothes and iron them” (N3)

“I could make my own sandwich … no too lazy so let the staff do it” (N 9)

Safeguard and protect

“They (staff) come into my room to see if I’m aright …” (N 7)

“I can keep secrets and talk to staff on their own” (N 34)

“Staff would take you to one side as ask you what’s wrong with you and might send you back to your room” (N 28)

Physical Privacy

“Don’t lock my room ... but the keys are there if I want to” (N 3)

“Anyone can go into my bedroom … I’d shut the door to stop people coming in?”(N 30)

“Can’t tell staff to get out of my room but they only come in to do something … give me my clothes” (N 40)

“Nobody is allowed in my room that’s the rules … the staff said so and we all agreed” (N 24)

“I lock my room to keep that lad out” (N11)

“She might raid the pantry in your bedroom” (N 40)

Personal safety

“People do not fight in the house – not too much!” (N 25)

“If someone is in bad form they would have to go down to their room” (N 34)

“When he shouts I stay away and go to my room – but he don’t do it too often so I don’t mind” (N 1)

“She (another resident) has a temper … don’t mention it … don’t go near her” (N 17)

“Feel safe they are safe people living around” (N 3)

“Can walk down to shop on my own and meet my sister” (N 9)

“I go down to the shop on my on to the Chinese and that and I have my own freedom” (N 33)

“House car drops me off … wouldn't be allowed to go as there is no footpaths so would be very dangerous with cars” (N 21)

“I don’t like going on my own as I get lost” (N 11)

Uphold and promote the equal rights

A right to do what they want

“I didn’t want to go home... so I can rang her up on the phone” (N 22)

“I have my own telly (in bedroom) but prefer to come up to the sitting room to mix with the others ... prefer to mix with others” (N 11)

“Prefer to be on my own” (N 3)

“Depends on my behaviour, sometimes I do be bold... cursing... sometimes I do curse”

(N 30)

“Respect each other, if you know someone has something wrong with them you don’t go around talking about it” (N 22)

“I will get to interview the new person to see if we get on together” (N 4)

Promote health and development

“Keyworkers would bring me out to my hospital and doctor appointments” (N 7)

“Want the staff to come in with me when I go see the doctor to see what’s going on” (N 42)

“Go in on my own and if anything wrong the doctor or nurse will write it down” (N 30)

“Wouldn’t have coffee for breakfast as it’s not good for you” (N 41)

“I’m fussy about what I eat” (N 7)

“Staff made me quit (smoking)...bad for my chest ... no won’t like to smoke again” (N 42)

“Staff would say that two (pints) is enough its the limit” (N 26)

Knowledge around medications

“Don’t know what they are for”

“I’m on two at night ... one is for making you sleep and the other one is for to like calm you down” (N6)

“I have my own tablets, leave them in my own room and lock them”

Integration and social networks

Friends in the house

“Everyone likes to watch the soaps in the sitting room” (N 16)

“Spend time watching telly together”, have fun with the lads” (N 13)

Friendship with family

“Staff take me out to visit my sister” (N 17)

“Go out with family, brother and sister takes me out” (N45)

“Staff would organise them (family) come here” (N 4)

“My sister used to bring me. I seen her a long time ago walking through town don’t see her anymore” (N 26)

Friendship with neighbours of their parents “When you are meeting people and you’re

going out the county you would meet a lot of people and have stuff going on” (N 26)

“If I’m late back with a few detours coming back (from home) there would be neighbours to talk” (N 3)

“Staff bring me over to bingo to meet the neighbours and have a chat about things” (N9)

Friends at work

“My friends …. Work in the kitchen with me ….” (N 20)

“Friends at work … come in a visit me on a Wednesday … the head girl - the boss would organise we go out for tea” (N 34)

“I have no friends since I left the job” (N 42)

“Those with intelligence stick together they have their own life and don’t have time”

(N 40)

Effective governance

“Black book of who’s on tonight or on tomorrow” (N 10)

“She on tomorrow, it’s on the list” (N 38)

“She’s not the manager, she is only passing through” (N 14)

Plan and use resources effectively plus deliver responsive and

consistent services “We have a residents meeting every

Monday (staff) ask use what sort of sandwiches we want or what to have for dinner” (N 12)

“Everyone gets the same (dinner) – you couldn’t start that, everyone will be wanting; if they see you with something different they would be wanting it” (N 43)

“Sometimes go down (town) on my own if not enough staff here ... they have to stay here” (N 3).

“I might not get to the Arch club if there is not enough staff” (N 35)

“Have two key workers who do my PCP with me they take turns one does it for six

months then the other, I did not choose them but I find I’m happy enough with them” (N40)

“Service users are understudies for key workers” (N 22)

“I would tell the manager that she has limitations in her vocation in working here”

(N 40)

Future considerations

Social networks

Independent living

Future development of services

Social Networks

Very limited social networks. Half the participants cited staff as their

friends. Concept of acquaintanceships versus

friendships. Physical presence not enough.

Independent living

Potential disempowering nature of pre-empting needs of residents.

Hired help.

Enabling and empowering.

Future development of services

Move towards a facilitative model of care.

Cultural and organisational change.

Policy documents Time to move on from congregated settings New directions