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CamRare Family Resources

Becoming an adult

Having a young child with a rare disease isn’t easy, but when they become an adult, there are a host of new challenges. As a parent, your right to manage your child’s finances and decide where they live disappears. This page discusses some of those common challenges and solutions.

Learning disability partnership

When your child is getting towards becoming an adult, a lot will change. Cambridgeshire Council offer a learning disability partnership. This scheme helps adults with learning disabilities arrange accommodation, handle finances and get the proper care.

“Working with over 65 organisations, employing over 1,500 staff through these organisations, the LDP has a central role in delivering specialist health and social care for people with a learning disability.”



Managing money as an adult

Department of Work and Pensions appointee
This is usually the most appropriate way to manage your child’s finances post-18 assuming they only receive income from benefits. With DWP appointee, you will be responsible for filling out all benefits applications on their behalf, and payments will go into your bank account.


How it works

  1. Go onto the government website and apply to be an appointee
  2. DWP will visit and interview you and your child.
  3. Fill out the necessary forms.
  4. DWP will agree and monitor the situation



Becoming a court-appointed deputy

When your child becomes 16 and then later 18, it becomes more challenging to manage their healthcare and finances. There is much red tape that is difficult to navigate around banking, benefits and healthcare. One way to get around this long-term is to apply to the Court of Protection to be a court-appointed deputy.


Benefits of court-appointed deputy

Full control over

    • You have full control over finances and healthcare decisions
    • Doesn’t require your child to have capacity at any point


  • £371 application fee
  • £100 assessment fee for new deputies
  • Yearly supervision fee of £35-£320 a year
  • You have to fill out yearly reports of what you have done as their deputy
  • Often not needed if they only receive money from benefits



Lasting power of attorney
A lasting power of attorney is split into medical legal or both and is much easier and cheaper to manage than a court-appointed deputy.



  • A one-off fee of £82
  • Can make medical and financial decisions on their behalf.


Accessing money in a child’s name if they will never have the capacity.

Some families have money in a children’s ISA that will be released to them when they turn 18. Unfortunately, this money is difficult to access. The first way is to become a court-appointed deputy, but this is expensive and might be more than the account’s value. If you don’t become a court-appointed deputy, the money in junior ISAs will be turned into an adult cash ISA, and it may be possible for your child to apply online to have the funds moved into a cash account they can access through an ATM. It would be illegal for you to remove the funds from their account if they don’t have the capacity.

Where will my child live?

You have a few options when your child turns 18:

  1. Keep living at home
  2. Move to registered care AKA residential care
  3. Move to supported living
  4. Live alone

What is supported living?

Supported Living is a place of your own with your own front door and private space. But unlike living on your own in the community, there are carers nearby that come around regularly to help depending on your needs. These can include helping with tasks like dressing, cooking, shopping, cleaning and personal care. Some facilities have staff nearby 24/7 that can be called to help when needed. Others have carers come around at set points of the day. What is included can vary, so make sure you visit and read up on the places you are thinking of going.


What is residential care?

Residential care is different in terms of provision and funding. Residential care is designed for people with higher levels of needs and requires 24/7 care. The funding is different as well, whereas the individual usually pays for supported living through benefits, and residential care is provided and paid for by the local council.


Choosing where to go

It’s important not to think of this as a final decision. Many people move from residential care to supported living over their lifetime as their needs change. Take your time visiting accommodation to help make the best decision for you and your child. More information on supported living and facilities in Cambridgeshire are linked below.


Facilities in Cambridgeshire

Getting into work

The UK government has many schemes to help learning-disabled people find work. Many of these are listed on the government website


Access to work
It may seem a long way off, but the goal of many of our Unique Feet community is that their child will be involved in work or volunteering in the future. If your child is able to engage in paid work, either part or full-time, the government offers an access-to-work scheme where a grant of up to £66,000 a year is made available to support a disabled adult getting into the
workplace. This grant will pay for:

  • Taxis to and from work
  • Assistive technology like wheelchairs and visually impaired monitors
  • Support worker or Job coach for interviews and in the work place.
  • Sign language interpreters for interviews
  • Mental health support


Charities that help

Mencap has a list of employers that have offered work experience and paid work to people with learning difficulties.



Warning: Vulnerable people can be exploited into doing volunteer work that people without a disability would be paid for. Be careful around work experience or volunteering work and always consider the question of should I be paid for this?