A year of living independently- Parent blog

My experience of supporting my son to live independently is that there limited advice out there about how to go about it. But today, I can say that I am proud that my son has been living in his own flat, supported only by me, for almost one year. I wanted to write this blog to share our experience with others going through something similar.

My son, J, is autistic and has ADHD, he was diagnosed when he was 12 years old. He has many strengths in terms of his personality, interests and intelligence, but he struggled academically and with aspects of looking after himself and processing instructions or staying on task.

Living independently as an autistic person

In his teenage years J went to a specialist school for autistic children and young people. His journey to independent living began some years ago. Just before he turned 18, I supported him to apply for Personal Independence Payment (PIP). He was awarded PIP at the enhanced rate, I didn’t know it then, but this was the first step to him being able to afford a rented flat.

After a year  of completing a supported internship after he left school, J was successful in getting a part time job for eight hours a week for a disability friendly employer. He is supported in that job by an access assistant, who helped him to carry out his professional duties, paid for through an Access to Work grant. I also supported him to apply for Universal Credit. Once he was on Universal Credit, I helped him to apply for a work capability assessment. When I say I “help” him, I mean that I wrote the applications for him, and I also logged in as him to his Universal Credit account (with his consent) and sent messages in his name. He would not have been capable of doing this himself.

I highly recommend subscribing to Benefits and Work^[1] who provide invaluable guides for how to complete applications for both PIP and applying for a work capability assessment for Universal Credit. J was assessed as being of limited capability for work or work related activity and now receives Universal Credit at an enhanced rate. The salary from his job is just under £400 a month. He is allowed to earn this amount without loss of benefits.

Moving into a private rented flat

 J might have gone on living with us, his family, at home for many years but because of some issues at home it was clear he would be happier in his own place. Just over a year ago after doing some research I found out that because J receives PIP, he is entitled to local housing allowance, which is paid as part of Universal Credit at the rate for a one bedroom flat. Taking his PIP together with his Universal  credit entitlement, his salary and the amount of local housing allowance which is paid towards the rent of a one-bedroom flat,I worked out he could afford to rent a flat.

J’s income is enough for him to reach the affordability criteria to be accepted as a tenant of a private rented flat. Not all letting agents think that and I found some to be very helpful and others unwilling to consider at all a tenant on benefits.

Fortunately, after looking for a suitable flat for only about one month, the fourth flat we looked at seemed to be ideal. J now has a comfortable studio flat with separate kitchen and bathroom in a purpose-built block owned by a professional landlord who is always considerate and professional. This landlord understands that J’s benefits are stable and therefore he will be a good long-term tenant.

From the first viewing with the letting agent I explained about J’s disability and said he would want them to deal with me, rather than going direct to him. They are completely fine about this. They understand J needs support, so I have dealt with all aspects of agreeing the tenancy, setting up J’s utility accounts and standing orders and dealings with the property manager from time to time.

Managing my son’s finances

J can manage his day-to-day financial affairs as long as he has had support to set up his direct debits. I explain everything to J, and he then signs the documents as necessary. Applying for the local housing allowance component of Universal Credit was fraught with complications, and we had to get advice twice from the Citizen’s Advice.

I can support J to live independently. The flat is less than two miles away and there is a fair bit I need to do for him. He won’t clean and will only do the most basic washing up, so I go in regularly to clean. I also bring his washing back home because it is more practical than trying to supervise him doing his own laundry in his flat. J likes me to go with him when he does a supermarket shop, but on a day-to-day basis he can heat up food or make sandwiches.

Looking to the future

I do not know what the long-term future holds. I know that my support dealing with the legal and financial side as well as practical help is essential. Without this, J would not be able to cope. He would get very confused and would give up. But he is 23 and has a level of independence that I am sure is doing him a lot of good.

In terms of getting him to do more things for himself, I am hoping this will happen with baby steps over the next few years. I worry about how he will live when I’m too old to support him and what services he may be able to access. But for now, I’m pleased and quietly celebrating J’s year of living independently. He is about to sign his tenancy for the next year and so I look forward to another year ahead.

About the author

I am the mother of two adopted young adult children, both with autism and ADHD, who were adopted by me and my husband when they were babies. I work four days a week in a profession that makes me very well equipped to navigate the legal and financial issues I describe here and to know how to get support when it is needed.