Waving a child off to university for the first time is never easy. But if they also happen to have a disability, either physical or mental, the practical aspects of letting go become even more complicated.  Where possible, encourage your child to take the lead in establishing what your role should be. Finding ways to communicate about what they hope to achieve from their time at university, and helping them to plan the first few steps is a useful way for everyone to get used to the transition.

Identifying needs

Sit down together and have an honest conversation about how you both feel that disability affects your child’s life. What sort of support do you normally offer? What happens if nobody is there to support them? What makes it more difficult for him or her to manage their condition? What coping strategies make it easier?

Draw up a brief outline of what a regular day or week looks like, taking into account bad days as well as the best. You can use this to identify key needs and health risks – a handy reference point during university visits and open days, or when applying for disability support packages (like Disabled Students Allowance and Social Services support).

This is also a useful exercise to repeat after your child’s first term or year at university: how is it different to what you both expected? Are there any additional obstacles that you might need to address?

Choosing a university

It’s always worth visiting potential universities to get a realistic feel for how it suits your student child. An off-campus site may cause challenges for physically impaired students if they have to travel all over town for lectures, or if there are lots of cobbled streets or hills.

A lot of older buildings may not be fully wheelchair accessible. If getting lost is an issue, it’s a good idea to map out regular routes together and try them out a few times before term begins.

It’s also worth thinking about the impact of living on campus, and how different types of accommodation may impact study and socialising. Is the university near a good medical facility, for instance? Some students will want to consider how close to home they are: nothing is less cool than having your mum pay an unexpected visit when all your mates are over, but having somebody near enough to make the journey might be useful in emergencies.

Remember, all universities have a legal obligation to make reasonable adjustments to a course or building to cater for a recognised medical need. Speak to university representatives to find out who will be looking out for your child. All universities should have a disability support team, so get in touch to discuss the help that they can offer.

Creating a network

Working together, make a list of the people your child is able to turn to for assistance and support. This may be parents, friends, family doctors, tutors and / or university disability support teams. Encourage your child to have discussions with the people who support them about the assistance they think they might need. Is there somebody who can make a check-in phone call once a week? Would it help to plan regular reviews or a quick visit every now and then?

Make sure expectations are clear, but reasonable – it’s important that everybody’s needs are being met, including your own. If your child has organisational difficulties, they might want to stick the list on a wall, or somewhere easy to find in an emergency.

Don’t forget that when they are over the age of 18, they may be entitled to support from social services. Contact your local council for more information.

Applying for extra support

Disabled Students Allowance (DSA) can offer helpful aids you may not have thought of: from adapted desks, to funding for taxis, to note takers. Information is available here.

DSA applications take a long time to be processed, and will need to be assessed by a representative before any funding or equipment is offered. It can also take months for this equipment to actually arrive, so make a note of deadlines and submit the applications as soon as you can.

These forms can be incredibly overwhelming: help to fill them out in as much detail as possible (as always, taking into account your child’s worst health days) may make the process less frustrating.

Being heard

Universities are huge, complex administrative bodies and it is easy to get lost within the system. If nobody speaks up when a student is facing challenges, even relatively small ones, it’s likely that they will be missed.

But part of the university experience is also about learning through making mistakes. Try not to panic if it seems that your child’s needs aren’t being met. Keep up the communication to make sure that these issues do not spiral out of control.

Being available during emergencies may be necessary, but for day to day issues, it will be a huge achievement every time the student in question is able to seek out the support they need themselves.

Pushing hard enough to ensure that all needs are being met can be frustrating and difficult, but nobody responds well to force. One of the hardest challenges for everyone involved with a disability can be finding the right tone to ask for what is necessary.

Helping to find ways to communicate their own needs with confidence and positivity is probably the best gift you can offer at a time like this. Keep coming back to your initial plans and reassessing the situation. Your input and relationship will probably change along the way, but this is all just part of the process, and an entirely necessary part of becoming the parent of a grown-up human being.

The Guardian