What does Person Centered mean?

A Conversation with Jack Pearpoint & Lynda Kahn

Watch the interview here

“Person Centered” is a phrase used by organisations and individuals, relating to care, planning, education…but its often misused. What does person centered actually mean? I chatted to Jack Pearpoint and Lynda Kahn, both renowned worldwide for their work in the field of inclusion and planning, about the ideas behind the person centered approach and what happens when it is mis-used, with a particular slant towards planning.

~~~~ Useful Links ~~~~~

Inclusion Press:http://www.inclusion.com

~~~~ Social Media ~~~~~

Jenny Trott’s social media

Facebook: http://facebook.com/jennytrott2
Instagram: http://www.instagram.com/jenny.trott
Twitter: http://www.twitter.com/jennytrott_

Research and Evidence from GENIO

Research Report: Supporting people to live self-directed lives in the community: Learning from 54 Irish projects

Founded in 2008, Genio works to achieve a vision where all people are valued and supported as equal members of society.

Genio’s current programmes in Ireland are reaching whole populations of need in disability, mental health and homelessness in Ireland, in many cases underpinning national reform programmes.

Genio is a European organisation based in Ireland working with philanthropy and government at national and EU levels. Specialising in social service transformation, Genio has a deep understanding and track record of complex system change and combines fund-management, capacity-building, action research and impact-measurement to effect public service reform. The hallmark of Genio’s work is to strive to ensure service user involvement at every level of service design and delivery.

This work has been supported by the Atlantic Philanthropies and is now being sustained by Government. In the last 10 years Genio has helped to facilitate change and improvements for over 8,500 people across disability, mental health, dementia and homelessness services.

In 2014 Genio published a research report on how to support people with disabilities to live self-directed lives in the community. This research was drawn from 54 innovative projects across Ireland that were supported by Genio.

 

Abstract

The paper outlines the key learning from 54 projects which have been supporting people with disabilities and mental health difficulties to move, usually from institutional settings, to live self-directed lives of their choosing in their local communities. The paper describes the implementation learning that has taken place; how this happens in practice; and the factors which lead to and support positive outcomes for the individuals. The paper draws on a significant body of data collected from these projects during on-site visits which included meetings with the project leads, key staff and the people being supported as well as family members, advocates and other allies.

The following characteristics have been identified as most strongly associated with good outcomes for the person and the organisation;

  1. Multi-level leadership – there should be ‘a champion’ at all levels of the organisation who supports and drives the move to a new way of supporting those using the service.
  2. Involving families and allies – needs to be done in a way that acknowledges their concerns, that considers how they want to be involved in supporting their family member and that considers the wishes of the person.
  3. Engaging and consulting with stakeholders – engagement should be future-focused on how different stakeholders are going to contribute to the new supports being developed.
  4. Staff skills and training – staff need to be trained/supported into these new ways of working.
  5. Readiness -the starting point should be that everyone is ready to move, with the emphasis on what supports needed to be put in place to ensure this happens safely and in a way that is designed by the person.
  6. It’s about more than housing – time should be built in for a process of really getting to know the person so that informed decisions can be made about accommodation options.
  7. Building strong and lasting relationships with the community – links with the community should be made in a very intentional and purposeful way for each person based on their abilities, contributions, wishes and needs.
  8. Start small and ‘model’ change – those involved act as ‘peer models’ for the process and the change involved. For those who will be moving, seeing their peer preparing and then successfully move, can give others encouragement that this is possible.
  9. Challenge of reconfiguration – in order to provide the supports for those who have moved, existing resources must be reconfigured so that the supports can move with the person.
  10. This takes time – to be done really well for each person, this process takes time.
  11. Focus on outcomes and monitor progress – progress can be greatly assisted by monitoring progress towards agreed outcomes.

Download here

 

 

5 Valued Experiences and the 5 Accomplishments

Living Room Conversations…ideas that influence Person Centered Work

John O’Brien and Connie Lyle-O’Brien have spent a lifetime moving our thinking about how people with developmental disabilities can be supported, shifting from institution and program centered life, to the person centered life of citizens contributing to the communities where people live. This video explores a framework for thinking that John and Connie began to develop more than 40 years ago, incorporating the five valued experiences and the five accomplishments that can shape the intent, focus, and delivery of support.

Click on the picture to watch the video or click here.

Our Homes: Home and Independence Project

The Inclusive Research Network published a ‘Our Homes’ report which is a book based on its research project. 

The Inclusive Research Network (IRN)  is made up of a group of self-advocates with an Intellectual Disability who carry out their own research on issues that affect their lives.

This report is evidence-based research that reflects the voices of people with disabilities, their experiences of moving to new homes and the supports that they received during the transition.Minister Kathleen Lynch, Minister of State at the Department of Health with special responsibility for Primary Care, Social Care (Disabilities & Older People) and Mental Health, launched the Inclusive Research Network  in the Castletroy Park Hotel, Limerick.

Read the report here: IRN Our Homes Report- Final 2015

More information:

If you have any questions please email brian.donohoe@fedvol.ie or irn@fedvol.ie or phone 091 792316.

National Strategy for Housing 2011-2016

The Government has written a housing plan for people with disabilities.

The aim of the housing plan is for people with disabilities to live as independently as possible within the community.

This housing plan is called “The National Housing Strategy for People with a Disability 2011-2016.

This Easy to Read document explains the housing plan.

In this document we will call the plan “The Housing Strategy”.

Read here: Housing Strategy EASY READ Version

Guidance on COVID-19

From the HSE and Health Protection Surveillance Centre

Guidance on the use of Surgical Masks when healthcare is being provided in
the context of the COVID-19 Pandemic

(Changes to the Guidance Issued on April 22nd 2020)

1. Clarification of the basis for the guidance on use of surgical masks published
on April 22.04.2020.
2. Clarification on the application of the 15-minute rule.
3. Clarification on safe use of surgical masks.
4. Clarification on disposal of surgical masks in settings where there is no direct
access to a healthcare risk waste stream.

Introduction

On April 21 2020, National Public Health Emergency Team (NPHET) decided that
HPSC guidance should be updated in accordance with a NPHET decision on the use
of surgical masks. This guidance reflects that NPHET decision and replaces previous
HPSC guidance on the use of surgical masks in the context of providing healthcare
during the COVID-19 pandemic. The content of this guidance will be incorporated into
other Infection Prevention and Control guidance documents as they are updated.
Use of surgical masks by healthcare workers in the context of viral respiratory tract
infection has two objectives:

1. To reduce the risk of droplet transmission of infection to the wearer.
2. To reduce the risk of droplet transmission of infection to others.

Use of surgical masks for these purposes is in addition to and is not intended as a
replacement for other measures to reduce the risk of transmission of infection. These
measures include hand hygiene and maintaining a distance of 2 m between people
whenever possible. Surgical masks must be donned correctly and should remain in
place covering the nose and mouth throughout the period of use. Masks should not be
moved up and down over the nose and mouth.

 

  • Surgical masks should be worn by healthcare workers when they are providing

care to people and are within 2 m of a person, regardless of the COVID-19
status of the person.

Surgical masks should be worn by all healthcare workers for all encounters, of
15 minutes or more, with other healthcare workers in the workplace where a
distance of 2 m cannot be maintained.

Note. This means that a healthcare worker should don a mask if they anticipate being
within 2 m of one or more other healthcare workers for a continuous period of 15
minutes or longer. It is not intended that healthcare workers should attempt to estimate
in the morning the total duration of a sequence of very brief encounters that may occur
during the day.

Safe use of masks
Always change your mask:

 When you answer the telephone or take a drink /break.
 When leaving a clinical area.
 If your mask is wet, dirty or damaged.
 When leaving a person’s home.

Never fidget with your mask when it is on and never store your mask in your pocket.
Disposal

When a surgical mask is no longer required or if a fresh surgical mask is needed the
surgical mask must be removed and disposed of safely.

  •  If you have access to a healthcare risk waste stream discard the surgical masks

in to that waste stream.

  • In settings where there is no access to a healthcare risk waste stream, for

example in a person’s home, volumes of waste are generally low and in that
context the following approach is acceptable.

  • Person with known/suspect COVID-19: In this context the mask will be used

in association with other elements of Personal Protective Equipment (PPE).
The mask and all other items of PPE should be discarded into a plastic bag.
The bag should never be filled more than three quarters full. This first bag
should be securely tied and placed inside another waste bag (double bag).
This bag should be stored securely for 72 hours before leaving it out for
collection in the normal domestic waste stream.

  • Person who is not known or suspected to have COVID-19: In this context

the mask may be used alone or in association with gloves or apron when
required for Standard Precautions. In the absence of a specific know
infectious disease risk (such as COVID-19) the mask and other items may
be discarded as domestic waste.


Click here to download Poster: COVID19-PPE-Safe-Mask-Wear-Poster

#Inthistogether Wellbeing campaign

Thank you for all of the fantastic support for the #Inthistogether Wellbeing campaign, from the Department of Health and the HSE, this will continue to push out across the airwaves into June.

The HSE has creates some useful resources on: Supporting someone with a disability during the coronavirus pandemic

The campaign radio ads can be found here https://soundcloud.com/user-774450354

The website is www.gov.ie/together and the hashtag is #inthistogether.

Partners are recommended to continue to share their wellbeing content under the hashtag #Inthistogether.

Next week there will be features on

  • Bord Bias ‘Bloom at home festival’ happening on May 31st
  • GAAs Club Step Challenge getting people out and physically active over the next month
  • safefoods START campaign helping parents to cope at home
  • Cruinniu na N’ogs build to the national day of free creativity for children and young people on the13th of June


Other Resources:

The Government’s roadmap for reopening society and business can be found here.


Family Carers Ireland – offering family carers free counselling sessions

Family carers sometimes have difficulty coping with their emotional well-being and their mental health and are more likely to struggle with stress, anxiety and depression than the general population. As a carer, there are times when you may find yourself struggling with your mental health and emotional well-being due to a combination of the demands of your caring role, and the additional challenges you might be facing as a result of the COVID-19 pandemic. Family Carers Ireland offer help to family carers, as they believe no one should have to care alone. They have developed a free, short-term online and phone counselling service for family carers and will connect carers with a qualified counsellor from a panel of approved professionals.

The service can be accessed through the website https://familycarers.ie/help-and-advice/online-and-phone-counselling-service/
or through the National Freephone Careline on 1800 24 07 24.

Nursing homes must be made a thing of the past

Older people have moral right to live in the community and be free of institutions

By Gerard Quinn, Ann Campbell

Original article published in the Irish Times on 20 May 2020

On Friday May 8th, Leo Varadkar reflected aloud on the Late Late Show on whether nursing homes are a wise investment for the future. The Taoiseach is one of the first political leaders in the world with the political imagination to think beyond orthodox arrangements.

He made his remarks in response to a question about whether he had any regrets with respect to the Government’s response to Covid-19. Uppermost in his mind must have been the sad reality that a high proportion of deaths in Ireland (and indeed right around the world) have taken place in care homes. Living in these places makes it intrinsically difficult to physically distance oneself. Protecting the service personnel attached to them is also a major challenge. Living with any concentration of people categorised as “vulnerable” to the disease is a disaster waiting to happen.

And so, the Taoiseach rightly reflected on a future where we might have to rethink the wisdom of such settings and the wisdom of public investment in them.

He speculated that we may have to think about elder care along the lines of disability care where it has in fact been official Government policy since 2011 to end congregated settings for persons with disabilities. That is, of course, still a work in progress. But at least the official ambition since 2011 has been to facilitate community living for all people with disabilities – regardless of age or severity of disability. More than this, the UN Convention on the Rights of Persons with Disabilities, which Ireland has ratified, recognises institutionalised facilities as a violation of human rights.

Despite popular misconceptions, there is nothing natural or inevitable about institutionalisation as a policy choice for older people. A number of countries have begun to move decisively in favour of community living options for older people. At its last summit on age policy (2015), the White House recommended that “long-term care” for the elderly should primarily entail reinvestment in the community to enable community living as a realistic option. Israel has a law on the books since 1988 to provide older people with a legislative right to supports to continue living in their own community. And the Australian Royal Commission on aged care quality has recently called for submissions on alternatives to institutions – a sure sign the policy landscape is shifting. Swedish experience shows that community living for older people is not without its own share of problems in implementation. But, overall, these problems are preferable to congregating older people in institutionalised settings with obvious vulnerabilities to pandemics.

Cost – effectiveness

Unlike the disability context, the “naturalness” of institutions for older people has yet to be fully deconstructed. One of the main arguments for them has to do with cost and effectiveness. However, given the massive amounts of money invested directly and indirectly (tax breaks, capital grants, subsidies), it is not at all clear that such sites are cost-effective.

Comparative experience shows that community healthcare costs can be kept within manageable bounds if the underlying health condition does not deteriorate (as it tends to do in congregated settings). It may well be that new flanking policy measures are needed to make community living work – like the relaxation of labour laws to enable flexible working hours to be able to care for a parent as well as more substantive family supports. This will undoubtedly mean expanding pension rights for carers which has in fact been demanded by the UN treaty body responsible for gender equality (the Convention on the Elimination of all Forms of Discrimination Against Women).

The Taoiseach’s remarks have significant European resonance. One of the Taoiseach’s colleagues – Mairead McGuinness MEP – was central to efforts in 2013 to change the underlying principles of the EU Structural and Investment Funds (ESIF) to ensure that EU taxpayer money would be spent avoiding institutionalisation and developing community living options. She deserves immense credit for this.

Correct and efficient

Popularly understood to apply just to people with disabilities, these new ESIF provisions actually apply to all – including older people. True, there have been setbacks. True, some countries are not going as fast as others. True, some abuse of the rules persists and has to be confronted by litigation if necessary. But the intent – using EU taxpayer money positively to create entirely new possibilities for our citizens – is both morally correct and economically efficient.

The European Commission is now relaxing the rules on funding for social infrastructure and ESIF expenditure across Europe to enable member states respond and recover sustainably. The World Bank announced it is prepared to deploy up to $160 billion (€146 billion) over 15 months in Covid-19 response funding. The European Investment Bank has pledged €5.2 billion for a global response outside the EU. There has never been a better opportunity to make sure that the money goes where it is truly needed: developing services and protecting rights by moving people out of residential facilities into safe, supportive communities immediately.

Consistent with the Taoiseach’s sentiments, and anticipating a new government, Ireland could certainly play a more proactive role in ensuring that ESIF funds play their part in developing community living options for all, including older people. Ireland also hopes to gain a seat on the UN Security Council. We would also encourage Ireland to take a leadership role and help set standards by championing the right to community living for older people in the much-anticipated UN treaty on the rights of older persons. A sustainable recovery requires no less.

Gerard Quinn

Gerard Quinn holds the Wallenberg chair of law at the University of Lund and is a research professor at the University of Leeds. Ann Campbell is co-executive director of Validity, an international NGO seeking to advance the autonomy and deinstitutionalisation rights of people with intellectual and psychosocial disabilities

 

Taoiseach Leo Varadkar on Government’s handling of COVID-19 | The Late Late Show | RTÉ One

Watch Taoiseach Leo Varadkar talk about the impact of the Pandemic on the Late Late Show.

Varadkar suggests that ‘maybe nursing homes are not the right approach and we need to enable people to live at home for longer.’ These comments are a response to the impact the virus is having particularly in larger residential settings.

Click on the picture to watch the clip.