Module 11: Future care planning

Overview: This module aims to:

Introduce family caregivers to future care planning;
Increase family carers’ knowledge and confidence of how to plan for future;
Signpost family caregivers to practical and helpful supports and guidance that are available.

It is best to have future care plans in place to ensure that a good quality of life continues, so that carers can be better prepared and supported through times of change.

Topics covered in this module:

Some practical solutions in engaging in courageous conversations about future care planning
An overview of some of the common reasons for family caregivers not planning future care
Signposting family caregivers to some helpful resources to enable future care planning to become part of the conversations will be presented.
The module provides suggestions for a proactive approach to ensuring the needs and wishes of your family member with intellectual disabilities, irrespective of their age, will continue to be part of their care conversations across life and not just at the end of life.

Lifelong caring

People with intellectual disabilities are living longer due to advances and improvements in healthcare, education and social care.
This has meant that caring roles have now been extended for family caregivers and those with intellectual disabilities can often outlive their family caregivers, who are most likely their parents.
Other care options may therefore need to be discussed earlier.
It can be very difficult for caregivers to have these conversations given the sensitive nature and fear associated with this issue.
Having the courage to start conversations about future care planning is the first and best step and here are some practical tips for encouraging you to have these conversations in relation to planning future care:

Table 1: Encouraging courageous conversations

Practical tips- encouraging conversations

o Be courageous and please try not to avoid these conversations for too long

o Have the conversations early on when you are ready to talk

o Develop your awareness of future care planning, including awareness of death and dying

o Involve your family member with intellectual disabilities early on in these conversations if they are able

o Be reassured and content that this is a proactive plan to ensure a desirable and happy future

o Involve family, friends and health and social care professionals in these conversations

o Know it is okay to be sad thinking of the future

o Recognise that planning the future and taking control is often better than waiting for the crisis

o Recognise the emotions associated with having to plan the future and seek additional support.

Sometimes when there is no plan in place for the future, plans often stem from a crisis situation such as death or frailty of the family caregiver or deterioration in physical or mental health of the family member with intellectual disabilities.
This often rushed, future planning is not ideal and often does not fully take into account the wishes of the family member with intellectual disabilities and that of their family.
In a recent interview with two family carers about their experiences of Covid-19, the first mother of her 32-year-old daughter with intellectual disabilities when asked a question about the future said:

“At this moment in time, it’s maybe burying my head in the sand but it’s something we haven’t put anything in order that will take care of that situation… it’s something as I say I just try not to dwell too much on but yes, it is a worry definitely.”

The second mother of her 17-year-old son with intellectual disabilities, also said she did not have a future care plan in place as she said:

“…there is no Plan B for [son] if anything happens to myself or my husband…”

These mothers’ words show the importance of discussing future care planning.

Common reasons for delaying future care planning

Many family carers have worries for the future, and it can often be difficult to plan for the future due to many reasons including;
- Fear of having the ‘difficult conversation’
- Fear of having to seek residential placement for your family member with intellectual disabilities
- Fear of your own mortality and that of your family member with intellectual disabilities
- Not knowing when is the best time to start these conversations
- Not being ready to have these conversations
- Lack of trust in care outside the family network
- Lack of information of realistic options
- Lack of knowledge of the availability of wider supports and services
- Lack of services or support available

Plan B: Future Care Planning

This section will discuss the different types of future care planning for and with a family member with intellectual disabilities.

Given the right environments built around needs, people with learning disabilities can thrive and gain independence in loving and supporting communities that meet their needs.
Future care planning can be described as ‘a plan for future needs to preserve the lifestyle and wishes for the person with intellectual disabilities …to ensure a desirable future’.
Sometimes health care professionals can call future care plans by other names. Such as, advance care planning, anticipatory care planning and end-of-life care.
It is so important to understand the different aspects of future care planning and take control to ensure that your son or daughter (or brother/ sister/ niece/ nephew/ grandchild) is well cared for when you are not around or able to fulfill your care giving role.
Engaging in future care planning has greater potential for positive outcomes to be achieved for the family member with intellectual disabilities and the wider family once engagement in a future planning process commences (1)

Table 2 provides a description of the different terms that are often used in future care planning.

Table 2: Descriptions of terms

Future care planning	Planning for the future to preserve the lifestyle and wishes for the person with intellectual disabilities whilst ensuring a desirable future
Palliative care planning	An approach to improve the quality of life of people with intellectual disabilities and their families facing the problem associated with life-threatening illness, life-limiting or life-ending conditions through early identification treatment of pain and other physical, psychosocial and spiritual considerations
End-of-life care planning	End-of-life is described as the likelihood of dying within the next 12 months and includes people whose death is imminent (expected within a few hours or days)
Financial care planning	Looking after the financial needs of the person with intellectual disabilities and putting a plan in place to ensure their financial well-being

Types of future plans to consider

Future care planning

Future care planning is about preparing the future needs of your family member with intellectual disabilities to preserve the lifestyle they are used to and provide them with the means to do so.
This might involve making decisions about their health with them or supporting them to have a say in where they live or work.
Planning for their future is key to ensuring that they have a good quality of life.

My Future Care Road Map Planning Tool Guidance Document by the Trinity Centre for Ageing and Intellectual Disability Dublin in 2019 and is a helpful tool:

https://www.tcd.ie/tcaid/futurecareroadmap/MFCRMGuidance.pdf

Advance care planning

Advance care plans help an individual to have their wishes known in advance of future medical treatments and care.
Having an advance care plan in place offers a sense of control over medical decisions.
For those who are unable to speak up for themselves, having family caregivers to speak up on their behalf is really important so their wishes and feelings are heard.

Advanced care planning for people with disability (Last updated 16 February 2022) https://www.disabilitysupportguide.com.au/information/article/advanced-care-planning-for-people-with-disability

Palliative Care Planning

Palliative care planning aims to improve the quality of life of people with intellectual disabilities and their families facing life-threatening illnesses, life-limiting or life-ending condition.
It looks at early identification of pain and other physical, psychosocial and spiritual considerations.
The needs for palliative care for people with intellectual disabilities is no different than that of the general population.
However, there may be a need to consider other factors such as communication difficulties; lack of insight of care options; inability to participate in decision-making; being unable to recognise signs and symptoms of ill health, pain and distress; co-existing and multiple comorbidities; complex family and social circumstance.
Often, end of life care and palliative care are terms used interchangeably and although palliative care may include end-of-life care, palliative care is much broader and can last for longer.
Having palliative care does not necessarily mean that death is close for that person, as some people may have palliative care for years. https://www.mariecurie.org.uk/help/support/diagnosed/recent-diagnosis/palliative-care-end-of-life-care

End-of-life care planning

End-of-life conversations can be very challenging and often these conversations are avoided as it is difficult to think about our own death or that of a family member.
As a family carer of a person with intellectual disabilities, it is important to be courageous and have those conversations.
Putting a plan in place means that the wishes and preferences of the family member with intellectual disabilities will be respected and offers some reassurance that the right decisions will be made as requested.
End-of-life is described as the likelihood of dying within the next 12 months and also includes people whose death is close (expected within a few hours or days).

Future financial planning

There are many considerations in planning the financial future of a family member with intellectual disabilities.
Mencap is a UK charity that supports and advises people with intellectual disabilities as well as families and family caregivers.
Take time to consider financial planning and it is really never too early to start.
Mencap have developed a suite of resources, one of which is in relation to ‘Wills and Trusts Services’ and can be found on the following link.

https://www.mencap.org.uk/advice-and-support/wills-and-trusts-service

References used on this page

(1) Brennan D, McCausland D, O’Donovan MA, Eustace‐Cook J, McCallion P, McCarron M. Approaches to and outcomes of future planning for family carers of adults with an intellectual disability: a systematic review. Journal of Applied Research in Intellectual Disabilities. 2020 Nov;33(6):1221-33. Available from: https://doi.org/10.1111/jar.12742

Helpful Links:

About Together Matters- Together Matters is a small UK organisation set up in 2016, by Christine Towers, who had previously worked at the Foundation for People with Learning Disabilities, where she began developing resources to help people plan. https://www.togethermatters.org.uk/planning-the-future/
‘Dying to Talk’ A series of short DVDs to help people with a learning disability think and talk about dying. Sunshine website – Research Project: Dying to Talk | Unisson Disability
England, N.H.S. (2017). Delivering high quality end of life care for people who have a learning disability. Resources and tips for commissioners, service providers and health and social care staff-(https://www.england.nhs.uk/wp-content/uploads/2017/08/delivering-end-of-life-care-for-people-with-learning-disability.pdf)
National Institute for Health and Care Excellence (NICE, 2019). Person-centred future planning. A quick guide for practitioners supporting people growing older with learning disabilities-(https://www.nice.org.uk/Media/Default/About/NICE-Communities/Social-care/quick-guides/person-centred-future-planning-quick-guide.pdf)
Taggart, L. and Hanna-Trainor L. (2015). Providing Supports to People with a Learning Disability Transitioning into Older Age. Knowledge Exchange Seminar Series (2015-2016). http://www.niassembly.gov.uk/globalassets/documents/raise/knowledge_exchange/briefing_papers/series5/l-hanna–policy-briefing.pdf
Trinity Centre for Ageing and Intellectual Disability Dublin, Ireland https://www.tcd.ie/tcaid/