Preparing for more independent living

My son, Lynden, is 20 years old with autism and a severe learning disability, and pondering those questions has led to many sleepless nights.

At 2 am, the future can look very bleak indeed, but in the cold light of day, reflecting on what I have already done and the plans I am putting in place to help him be as independent as possible puts my mind at ease as I know that I am doing everything I can.

In this blog, I will share some hints and tips relating to education, employment, housing, friendships, and relationships which are fundamentally important to your loved one’s transition to adulthood. I hope it will help you feel more confident about supporting your loved one to reach their potential for independent living.

Our children are all unique, so take from it what you can, and ignore any bits that don’t relate to you!

Preparing for adulthood

Sometimes referred to as ‘transition to adulthood’ tends to fall into the following categories:

1. Education
2. Employment
3. Housing – respite
4. Friendships and relationships
5. Health
6. Finance and benefits
7. Legal
8. Transport and travel

The key is to plan as much as possible in all these matters. Leaving things until the 11^th hour may allow you to live in blissful ignorance for longer, but it tends to mean you will have fewer choices, making any transitions more stressful, heart-wrenching, and more likely to fail.

Opting for the safe choice for our loved ones may not necessarily be the best choice for them. It may be easier for us to keep them at home and wrap them in cotton wool than taking risks – but does it benefit them in the long-term? And will it help them when you are no longer around to take care of them?

It is the fear of my son’s life falling apart when I die that motivates me to practise a bit of tough love to make him as independent as possible now.

What do we mean by independent living?

The phrase ‘independent living’ can mean very different things to different people. Our children's independent living goals will be unique to their needs, aspirations, and potential.

I try to set us goals that are ‘aspiring but realistic.’ By doing this, we are pushing our boundaries but not setting ourselves up for failure. I also tend to have contingencies in place so that if it becomes clear that we will not get there, I have a plan B.

Once you have decided on the goals, share them with anyone involved in your son or daughter’s life so that everyone is striving towards the same outcomes.

Education

A young person with an educational healthcare plan (EHCP) can get additional support with their education up to the age of 25. In practise, formal education tends to become part-time at 19 when they go to college and finish two or three years later. However, if we view education as progressing towards the goals you and your loved one have set, there are many ways to continue development.

In Essex, ACL (Adult Community Learning) offers many supported learning opportunities and accessible apprenticeships for adults with special educational needs (SEN).

If your child attends a day centre, this can be an excellent place for them to continue to develop their skills. A good day centre will involve them and you in agreeing on the desired outcomes and put a person-centred support plan in place to help them get there. They will also review progress regularly and update the plan accordingly.

The more progressive day centres, like ECL, offer courses and qualifications such as ASDAN, providing a structured and accessible way for people with learning disabilities to develop skills for learning, work, and life.

Learning can take place at home, too. Although I know that Lynden will always need around-the-clock care, I want him to be able to do as much as he can for himself to reduce his reliance on that care and boost his self-esteem. Once a week, we have a ‘Lynden do’ day. On these days, he has to do as much as he can for himself, from getting up, showering, selecting appropriate clothes, cooking meals, clearing away, and doing the washing and food shopping.

I create visual aids so he knows what to do next with minimal verbal prompting from me. He needs more help with some tasks than others, but that is okay because it is a learning day, and the more we practise, the more adept he gets. We try to put these skills into practise as much as we can throughout the week; however, when daily life is busy and we are on a tight schedule, it is a little more difficult. But on ‘Lynden do’ days, when he waits for me to do something for him, my response is ‘Lynden do,’ and with a typical teenage roll of the eyes, he invariably gets on with it!

Employment

For Lynden, paid employment is probably an unrealistic goal because of the severity of his learning disability. He currently does not have the interest or attention span to stick to one thing for long enough…unless of course, it’s YouTube!

But many people with autism and learning disabilities can, and do, achieve paid employment. The chances of success are far greater with a supported or inclusive employment programme. Essex is fortunate to have ECL’s fantastic Inclusive Employment service, which since March 2020 has successfully helped 330 people with learning disabilities and/or autism to achieve and sustain paid employment.

Having said that employment would not be for us; I am still keen to find Lynden some sort of supported volunteering within our local community. We have some great PAs (I will come onto that later) who are eager to support him to help at our village café or charity shop. I think this would be perfect to give him a feeling of self-worth and further integrate him within our local community. I am liaising with Lynden’s college and day centre to ensure they are giving him opportunities to learn some of the skills he’d need to do this.

Housing

The subject of where our offspring will live in the future is a troubling one when they have additional needs. There is a whole range of living options, from continuing to live in the family home to fully independent living, with various supported living and residential home options in between.

For the reasons I mentioned earlier, I do not want Lynden to live at home indefinitely. While I know that he will never be able to live independently, I want him to attain the best quality of independent life that he can, so I am weighing up various supported living options for him.

Our ‘Lynden do’ days, combined with his time at college and his day centre, are crucial to equipping him with the independent living skills that will enable him to live his life to the full.

Undoubtedly, the day he moves out will be a massive wrench for him and me, so we have started a very gradual plan to get him used to spending time away from his family.

When the county council undertook Lynden’s care needs assessment, I requested respite, which usually consists of a person being supported by carers away from their main home for a set number of nights a year. It can be a good way to ease yourselves into a bit of separation and dip a toe in the water of greater independence.

As I write this, I can almost hear weary parents of people with learning disabilities crying, “But where do they go for overnight respite?!” and I do acknowledge that this is the tricky bit. The respite centres offered by local councils are not for everyone, and they are often oversubscribed, have lengthy waiting lists, and are, therefore, not particularly flexible in when they can offer respite.

Instead of doing this, we take the respite budget as a direct payment, and I manage that money to pay PAs directly to provide the care. It takes a bit of organisation, but for us, it works perfectly as it means I can select who is supporting Lynden. I can train them to support him consistently and allow him to practise those vital independent living skills without me hovering.

Regarding where to hold the respite, I suggest planning it when you want to go away, whether to stay with family and friends or go on holiday. The carers can then support your loved one in their own home while you get a well-deserved break.

Using Direct Payments, I have recruited a little team of three wonderful PAs who all wanted some part-time work doing something meaningful. I found them all by posting on social media and then doing rigorous interviews and trial periods with me in tow before letting them support Lynden independently. It works brilliantly; each of the PAs brings something different to Lynden’s life, and we have a WhatsApp group that allows them to share ideas or concerns. Having a pool of PAs means they provide each other back-up. Furthermore, because I am not using agencies that will typically take a cut, I can pay the PAs the full amount of the hourly allowance I get from the county council, which enables me to attract and retain first-rate carers.

Direct Payments are often an under-subscribed form of funding support. I personally find it an excellent way of putting together a flexible package of support for Lynden that works for us as a family. It does come with some responsibilities, organisation, and admin, though, so it does not suit everyone.

Friendships and Relationships

An essential part of preparing for adult life is helping your child to widen their circle of support. Some people can build their friendships and relationships with ease. For those with autism, who typically have difficulties with social interaction, it is all too easy for them to become isolated. My son does not try to engage his peers and seems happy in his own company. I would love for him to have friends, especially as he has no siblings, but that is more about what I want for him than what he wants right now. He does, however, enjoy interaction with my friends, his carers, and older members of the family, who are more nurturing and behave predictably.

Lynden goes into the community daily with me, his PAs, or the college and day centre staff. We visit places like the local gym, shops, and his favourite pubs and cafes so frequently that all the staff know him. In fact, getting him to place his own food order in his regular pub is challenging because they know him so well that they have started cooking it as he walks through the door! That is wonderful, though, as people in our local area not only recognise and accept Lynden, but some have grown quite fond of him. It is a great comfort to me that there are people out there who would look out for him and help him if he needed it.

I hope this blog has been helpful. If you need further guidance, your local social care team is an excellent first port of call. If you are not already engaged with them, your GP or staff at your education placements and day centres can signpost you. Many charities, websites, and Facebook groups also provide excellent advice. I will list some of them below.

Good luck with your planning; it can be daunting but know you’re not alone. My experience of the world of learning disability and autism as a parent and professional is, in the main, a good one. There is lots of support out there, and many well-informed and kind people will want to help.

Useful resources:

Education and skills development

https://supported.aclessex.com/AvailableCoursesList.asp

https://www.asdan.org.uk/

https://send.essex.gov.uk/

Employment

https://www.ecl.org/services/learning-disability-autism-support/inclusive-employment

Housing

https://www.mencap.org.uk/advice-and-support/housing/housing-faqs

https://dimensions-uk.org/what-we-do/supported-living/

Direct payments

https://www.essex.gov.uk/adult-social-care-and-health/paying-care-and-support/personal-budgets/direct-payments

General

https://www.autism.org.uk/

https://dimensions-uk.org/

https://www.scope.org.uk/

https://www.essex.gov.uk/adult-social-care-and-health