Employing PAs – a guide for autistic people

Personal Assistants are often called a PA. This guide will help you understand more about employing a PA for an autistic person.

Self-directed Support, which is often just called SDS, is designed to be flexible to meet the needs of the person. This is where the money comes from to pay for the job of a Personal Assistant.

This also means the role of a PA will be flexible.

This guide has been written by professionals that are also autistic. It includes the lived experience of autistic people who are PA employers.

The guide includes the lived experience of PAs that are also autistic too and that have worked for autistic people who are PA employers.

Not all autistic people are the same. This guide aims to capture some of the main things you could experience.

 

What can a PA help with?

SDS is meant to give the person receiving support quality of life. This means that when it works well, a PA is more than just making sure a person is washed, has clean clothes and has eaten.

The job of a PA will include activities that will help a person lead a full and meaningful life.

For example, this could include:

• Going to the shops together.
• Help with attending appointments.
• Helping visiting family members.
• Helping go to the football.
• Help attending a loved one’s grave.
• Help going to art or fitness classes.
• Opening mail or helping with email.

The role of one Personal Assistant will generally be different to another. This is because being a PA is designed around a person’s individual needs and personal goals.

If you are unsure what a PA can help with, you can ask your local Independent SDS Support Organisation for advice and guidance. You can find their details using the Find Help search tool.

 

What a PA cannot help with

A PA can be asked to do a wide range of activities.

There are some activities that a PA should not do.

For example, these include:

• Giving medication (unless they are qualified and insured to do this).
• Managing a person’s finances (unless they have been given the legal permission to do this).
• Anything sexual.
• Anything that is illegal.
• Giving medical or legal advice.

If you are unsure what a PA cannot help with, you can ask your local Independent SDS Support Organisation for advice and guidance. You can find their details using the Find Help search tool.

 

What do you look for in a good PA?

Looking for a person that has a positive attitude and that is kind and honest is a good starting point. This is more important than qualifications.

Treat the person working for you with the same kindness and respect you would want to be treated with yourself.

Is this someone you would want to spend time with? They might be with you a lot of the time, so it is important that you get on. But remember, you will still be their boss.

Are they OK with taking instructions from you?

Does this person respect your boundaries, personal space, and home?

Do they have a willingness to learn new things? This will make them better at their job.

Do you trust them? They will find out lots of personal information about you and your home. Will they be professional and keep this confidential?

Learning to communicate well with your PA is very important for both of you. Do they want to learn how to communicate well with you?

 

PA employer’s rights and boundaries

As a PA employer, you have some legal rights.

These include:

• Giving an extended probation period of up to a year to see what a person is like as a PA.
• To be treated with respect.
• Fair and clear disciplinary process.
• Fair notice of ending employment.
• Fair notice of holidays and days off.
• Confidentiality about your situation and your home.

 

PA rights and boundaries

PA’s have some legal rights with you as their employer too.

These include:

• Paid holiday entitlement and days off.
• Workplace Insurance.
• Safe working environment.
• To be treated with respect.
• Fair and clear disciplinary process.
• Fair notice of ending employment and any changes in working hours.

 

Your responsibilities as an employer

As a PA employer you have some responsibilities.

Some of these responsibilities include:

• Giving your PA a written contract of employment. You can find more information about this here.
• Getting Employers’ Liability Insurance. This covers the cost of paying compensation if any of your PAs is injured or becomes ill at work. You can find more information about this here.
• Paid holidays and days off for your PA employee. When possible, unless it is an emergency, this should be a requested and agreed together a minimum of 2-4 weeks in advance. This allows for replacement PA cover to be arranged for when your PA is not there.
• Provide the regular working hours you agreed with your PA.
• Pay your PA on time and regularly. This is normally paid at the end of every month for the work they have done over that month.
• Pay your PA’s National Insurance and tax contributions directly from your PA’s wages. You will also have to pay Employer’s National Insurance. You might have to contribute to a work pension too, depending on the situation with your PA. You can get help to pay wages, tax and National Insurance from a payroll provider. Find out more about this here.
• Give enough advance notice if you are ending their job. This is so that your PA can look for alternative employment. This would normally be at least a month, but ideally 2-3 months’ notice.
• Check if your PA has the right to work in the UK.
• Get a PVG background check on your PA. This is to check if they are safe to work with you and to be in your home.

 

What to expect

Your PA is helping you to lead a full and enjoyable life. This can be a really positive experience for you both.

It can also be challenging sometimes.

Building trust, respect and understanding between you and your PA is really important. This will help you work well together.

It will also make your PA’s job more enjoyable, which is great for you both. They will be more likely to want to stay working for you.

Your PA will be working from your home much of the time. This needs respect, confidentiality, and sensitivity.

When being a PA works well, it is more than just a job. Your PA might be the main person you have contact with all week.

There is a balance between building a genuine connection with your PA employee and having healthy professional boundaries. This is good for you and your PA employee. Remember, you are still their boss.

Your PA is also a human being with their own needs. They are not at your demand 24 hours a day, seven days a week. They need time off, holidays and their own space away from being your PA too.

It is really important to respect your PA’s boundaries and to treat them how you would wish to be treated yourself.

Employing a PA is a learning journey for both you and your PA. It is important that you give your PA the chance to learn new things that will help you. This might include how you communicate too.

Working together well with your PA might take 2-3 months to get going as you start to get to know each other.

Your PA might be nervous about starting to work for you. That is OK. Do not expect everything to be perfect on their first day.

If after 2-3 months things still do not feel right between you and your new PA, it is OK to give notice to end them working for you. You can look for another PA that might work better with you.

 

Where to go if things go wrong?

Sometimes things do not go according to plan.

Ideally, you should first try to work out any difficulties with your PA employee. Wait until you are both calm to do this. Make sure it is at a time that suits you both too.

If you cannot sort things out between you there are organisations that can help you.

Some local organisations help people who employ Personal Assistants and can give you advice if things go wrong.

You can find if there is a local organisation that can help you using the Find Help search tool.

Some insurance companies also provide advice to PA Employers. You need to have Employers’ Liability Insurance when you employ Personal Assistants. Ask your insurance company if they can give you help and advice on dealing with any issues with your PAs.

You can also contact the Advisory, Conciliation and Arbitration Service (ACAS), who advise employers on employment issues. Visit their website here.

 

Employing fellow autistic people

Studies have shown that communication between autistic people is often much better than between autistic people and non-autistic people.

This is why we believe that having autistic people delivering support to other autistic people can be a really good idea.

An autistic person can also be another autistic person’s PA.

All autistic people are individual people with their own unique differences. What is seen as a positive experience for one autistic person might be a negative experience for another autistic person. Always ask the person, do not assume.

Communication can take many different forms. For some people this is speaking. It could also be using text or writing. It could be through signs or gestures. It could be a combination of all of these on different days.

Some people have specially adapted methods of communicating. It is up to you to help your PA use this with you.

Everything a person does can be communication.

You need to learn to understand each other.

The person helping you might have their own communication barriers. Part of their job as a PA might be helping you find a way of communicating that works for both of you and makes you feel understood.

Routine and advance notice of any changes of plan are very important for many autistic people.

Many autistic people have specific sensory needs. This can include a wide range of different things that you might not even consider. These can sometimes be very different from one autistic person to another autistic person.

These sensory needs can have a huge negative impact on an autistic person when they are not met. All autistic people have different sensory needs.

Examples of sensory needs for some autistic people might be:

• Fabrics (too soft, too rough, too heavy, too light)
• Food (including textures, colours, crumbs, different foods touching each other on the plate)
• Lighting (too bright)
• Sounds (types of sounds, volume, eating noises, too many sounds at the same time)
• Personal space (too close, direct long eye contact, sitting directly opposite a person, specific seating, unwanted physical contact)
• Not asking if physical contact is OK first, for example hugs, touching or handshakes

Some autistic people might communicate in a different way or style than you do. This is neither a good nor a bad thing, it is just different.

Most autistic people prefer clear, specific communication.

It is a good idea to avoid saying or doing anything that can be understood in a few different ways. An example of this might be instead of saying “I will be back shortly”, instead be specific by saying “I will be back in 15 minutes”.

As an autistic person yourself, be aware that what you assume is good for you, might not be the same for the autistic person that is helping to support you.

 

Positives of being an Autistic PA employer

quote(s) to be added from employers

 

Next steps

You can explore the rest of this Handbook to find out more about employing Personal Assistants.

There are lots of organisations across Scotland who can help you with being a PA Employer. Find if there is an organisation local to you using the Find Help search tool.