Using POMS to get a better quality of life: The Outcomes Network of Ireland survey

by Bob McCormack, Margaret Farrell

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Personal Outcome Measures (POMs) were introduced to Ireland at a Western Care Conference in Westport in 1997, and since then a growing number of service providers have begun using these measures to develop their service.

What are Personal Outcomes?

Personal Outcomes are the things that matter most to a person, and the Personal Outcome Measures cover all aspects of a person’s life—from safety and protection to best possible health, from having choices to achieving personal goals, from connecting to families to having friends and relationships, from living in the community to taking an active role in it, from upholding human rights to promoting mutual respect. The 23 personal outcomes are like a prism casting a ray of light on every aspect of the person’s life. They are called personal outcomes because each outcome is defined by the person, and not just by ‘experts’. So, for example, if the person has friends—but only sees them in the centre and wants friends around where they live, the ‘having friends’ outcome is not present for them.

Not every personal outcome is equally important. What matters most to the person will change at different stages in their lives. At one time their priority may be choosing a job, or deciding where and with whom they want to live. At another time it may be an issue about being treated fairly, or developing relationships, or getting more involved in the local community. It depends on the person and what is happening at that point in their life.

The connection to person-centred planning

POMs are a very effective way of gathering information on the person’s current experiences and identifying their needs and priorities. Because of the wide-ranging nature of the 23 measures, every aspect of the person’s life is considered. It will be clear that, while some outcomes are fully present for the person (for example, they have chosen their work, or they have enough friends), other outcomes are not present. They don’t have enough say regarding the daily routine, or they don’t feel respected.

People with disabilities generally don’t have a great quality of life. So there are likely to be lots of outcomes not fully present. The key to effective Person-centred planning is to explore with the person the outcomes that are most important to them at the present time—what they want addressed urgently. These are the priorities that the Personal Outcomes Plan should address. Figure 1 shows how POMs can be integrated into person. centred planning to reflect what is most important to the person.

A person-centred approach

POMs is a ‘one person at a time’ system. The person him/herself is at the centre of the process—the main source of information on what their life is like at the moment. There may be aspects of their life which they don’t want to talk about, and this is accepted without question. For example, the person may not want to discuss with their key worker their intimate relationships, or abuse issues that occurred in the past.

Some people have limited communication and this is where LAMH, PECS, Talking Mats and other communication systems are useful. Also, family members and staff who have worked closely with the person can assist, based on their observations and the person’s reactions to different situations. What matters is trying to understand the person’s preferences and choices.

Developing responsive services

Having a good plan will make no difference for the person, unless the plan is implemented. But implementing individual plans is hard work because people will not all want the same thing! Some people’s priority outcomes will require extra resources, or staff to work much more flexibly, or the service to be much more open to different ways of doing things.

In any organisation, staff find comfort in doing the things they know they are good at—and the things they have done for years. Trying out new ways of supporting people is scary! What if it doesn’t work? Will I be blamed?

Developing a responsive service requires both managers and staff to move out of their comfort zone and try new ways of supporting people to achieve the goals they want.

The challenge of achieving personal outcomes

As you can see, POMs is a major challenge for service providers. If you have a large number of people living in one building, it is not an integrated setting and it is very difficult for them to take an active part in the local community. They may not have the level of privacy they want or have much choice in their daily routine. They may have lost their connections with family and relatives.

Even for community-based services there are lots of challenges in moving from a focus on groups of people, to thinking about what each individual wants, and trying to respond. Even quite small settings, such as community houses, will often raise issues regarding who you want to live with, controlling personal information, and the continuity of staffing. Finally, people’s expectations increase as their life improves. When immediate goals are achieved, more challenging goals seem possible. Having lived in a community house for some time, people may want to live more independently in an apartment with a friend, or on their own.

A measure of quality of life

The Personal Outcome Measures are a practical quality-of-life measure. By adding up the number of outcomes that are fully present for the person, that number—say 5—that gives an indication of the person’s quality of life. If there are five outcomes present out of the total 23, there is lots of scope for that person’s life to improve. Besides yielding an individual score, the POMs measure can also give a wider picture of how well the service provider is meeting people’s needs and priorities. By combining the personal outcome scores of all the people in the service as a whole, a clear picture emerges of the overall quality of life of the people supported by the service. By doing this every year, we can see if the service is getting better at supporting people achieve their personal outcomes.

The personal outcomes relate closely to many of the standards set out in HIQA’s National Quality Standards, including Quality of Life, Protection, Rights, Person-centred Plans and Health. In fact, personal outcomes go further than what is required by the HIQA standards in many cases, and they strengthen agency efforts to comply with them.

The survey

Twenty-two intellectual disability services that were members of the Outcomes Network of Ireland decided to undertake a survey using the Personal Outcome Measures. They picked a random sample of 256 people with intellectual disabilities across Ireland, men and women with a mix of age groups and levels of disability. Each person was asked if they were willing to take part in the survey on condition that no identifying details were revealed (only PIN numbers were used). Where a person declined to take part, another person was randomly selected to replace them. (See the December 2009 Issue of the British Journal of Learning Disabilities for details.)

  • The survey was coordinated by the Delivering Outcomes to People Project which had funding from the Department of Justice, Equality and Law Reform (see www.outcomestopeople.ie for full Report). To ensure the results were accurate, a number of steps were taken:
  • A briefing day was held for the survey coordinators of the services involved;
  • Two POMs-trained staff met with the person in every case;
  • A POMs trainer checked the accuracy of the scores with the information gatherers;
  • No details of the person, their unit or centre were revealed to the project.

As well as discovering which outcomes were fully present, the information gatherers also found out if there was ongoing support for each outcome from the service. In other words, did the service actively support this person to have friends, or to choose where they worked, or to make full use of the facilities of their house? Active support might consist of linking the person in to social activities where they might make friends, or having an employment support service, or an independence-training programme.

Survey results

The 256 participants were randomly selected from almost 5000 adults supported by the 22 participating service providers, and they were broadly similar to the profile of all adults with intellectual disabilities in the national database, in terms of gender, age and level of ability. The survey results were analysed using the SPSS statistical programme.

The number of personal outcomes fully present varied greatly— from two people who had no outcomes, to one person who had all 23 outcomes present. The average number of outcomes present was 9.4 outcomes. In other words, most people had fewer than half the personal outcomes fully present at the time of the survey. The personal outcomes most often fully present were:

  • Reaching a personal goal in the past year
  • Ongoing contact with family or guardian
  • Adequate privacy.

These were the easy-to-get personal outcomes achieved by two-in-three people. The Personal Outcomes least often present were:

  • Choosing where and with whom you live
  • Exercising your personal rights
  • Choosing services such as hairdresser, dentist or doctor. These hard-to-get outcomes were achieved by one-in-five people, or fewer.

The number of personal outcomes a person achieved was influenced mainly by level of disability, and where they lived. Those with a mild or moderate intellectual disability averaged 10 outcomes, while people with a severe or profound disability averaged 7 outcomes.

People who lived at home averaged 10 outcomes, while people in community houses averaged 9, and people in campus settings averaged 6 outcomes. Where someone lived was influenced somewhat by their level of ability and their age, with a higher proportion of younger, more able people living at home.

Some services have been supporting people to achieve their personal outcomes for some time, and six services had gone on to achieve accreditation with the Council for Quality and Leadership. These accredited services averaged 11 outcomes present, compared to 8 outcomes present for non-accredited services.

It is important to remember that these average figures are generalisations. Some older individuals with severe intellectual disability scored well above some younger individuals with mild intellectual disabilities. What influenced this was the presence of effective individual supports to achieve and maintain particular outcomes. For example, if you have access to a work experience and job placement service, you are more likely to achieve your personal outcome relating to choosing where you work.

What were people’s priorities?

The survey identified what each person’s priority outcomes were. The results showed that every one of the personal outcomes was a priority for someone. Indeed, the priorities were very widely spread. The most commonly identified priorities (which were chosen by about 1-in-3 of the survey participants) were:

  • Choosing your own personal goals
  • Choosing where you work
  • Participating in the local community Following Figure 1 earlier, the person’s priorities are the focus for the person’s personal outcomes plan. The plan turns priorities into specific, measureable goals which will be worked on through the year.
The stories behind the survey

While the figures from the survey give us an overall picture of people’s quality of life, they do not give us the inside story of how personal outcomes are achieved with the supportive efforts of family and staff. Here are some of those stories:

Sarah: Community-building
Sarah, a young woman in her early 20’s, loves to sing and perform and this was one of her personal outcome plan goals. Her key worker knew someone involved in local variety shows and she contacted a number of local groups—the Ceili dancers, the Youthreach programme, and others—to put on a show which included drama, singing, and set dancing. Sarah, and some of her friends who were also interested, became involved. This meant getting to rehearsals, practising her routine of dance and song, advertising the event throughout her social network and family circle, and sorting out the right clothes and makeup for the night. The show took place four months later. The night went off really well and was a great success. Sarah was invited to the post-show party, and was also invited to participate in next year’s performance. The whole event created a good buzz and has the potential to be a regular annual community event.

‘People live in communities, not in services’
Liz Weintraub, self-Advocate

Paul: Managing the risks
Achieving some outcomes requires a lot of careful planning and preparation, as Paul’s story shows:
Paul is 27 and lives in a community house with five other young adults and goes to a small centre during the day. He has a serious heart condition and his lips go blue if he over-exerts or walks too far. He is on medication and is closely monitored medically. He has a very good sense of time and reminds staff when it is ‘meds time’. He is not actively involved in his own health care, though he shows a strong interest. He has a standing invitation to go away with friends in the Arch Club, but his doctor says it would not be safe for him to go away overnight or for a long weekend without a nurse who is familiar with his condition. It would be very difficult to free up the nurse.

Paul’s health issues were impacting on his community involvement, his friendships, and his freedom of movement. So Paul’s staff looked at other ways of dealing with the health risks.

Paul ‘wrote’ his own health care plan with help from his key worker. He developed a chart showing the colour, shape, number and timing of his tablets, along with the picture of the part of his body they were for. Every week he helped staff sort out his tablets into the right containers. He got a watch and used his mobile phone to monitor the time and was encourage to remind staff, especially new staff, about the meds times. He was given information on the side effects of tablets, and what might happen to him if he forgot to take his tablet, and what to do if a tablet was forgotten. He is getting to know the manager-on-call, and knows her contact numbers. He also is learning about the emergency services and knows how to dial 999 and ask for ‘medical emergency’. He is keen to be more involved in taking his own medication, but staff still feel this can only happen with full supervision.

Paul is going on an overnight away with his ARCH Club, who actually have a nurse volunteer going on the trip, who has linked with the unit staff nurse, visited the house and is familiar with Paul’s condition. Staff will be available by phone during the night away and emergency services are within easy reach of the hotel. These plans were agreed by Paul’s doctor.

Paul has been supported to apply to the HSE for a motorised scooter which would help him move around the local community much easier, without having to be driven or pushed in a wheelchair- If this application is not granted, Paul’s key worker will explore with him if he would like to use his personal resources to fund this piece of equipment, having enjoyed having one on loan for six weeks.

Stephen: Moving out
Choosing where and with whom you live is always a challenge, and family and service provider need to work closely together to achieve a good outcome:

Stephen is 57 years old and lived at home until his mother died. He works independently three days a week, travels alone, manages his diabetes, and is in a long-term relationship with Silvia. He lived until recently in a low-support community home with four other men, but this has now broken down, and he lives with his sister temporarily. He wants to live alone and he has been telling us this at his planning meetings for years!

Stephen’s sister and his key worker are now actively supporting him to explore his options, including renting a flat from the local authority near his sister, getting rent allowance, and accessing some service funding to pay for some flexible staff supports. He is now staying alone for periods in a vacant apartment.

Stephen’s goal sets challenges for both his family and the service. Some members of the family are concerned for Stephen and want him ‘looked after’, with the security of knowing that they’re not responsible when something goes wrong.

The agency may need to practise ‘active non-interference’, where they stay in close contact with Stephen and his circle of supports, keep a monitoring eye, but do not get in the way of his independence. A staff member who works in a local community house has been approached by Stephen and agreed to support him with things of his choice, paid by the hour from his funding allocation. He is looking into recruiting a housemate, someone who would share a two-bedroom apartment rent-free in exchange for specified support hours.

Stephen’s story shows how service providers need to balance their concerns regarding ‘duty of care’ and health and safety policy, and family worries, against Stephen’s clear wishes and priorities. Assessing how much support Stephen needs requires a careful judgment. ‘Well-managed risk enables people to experience higher levels of independence, supported by the least intrusive safeguards’. (Patricia O’Brien 2007) (* not the person’s actual name.)