Autistic people are an incredibly diverse group, even within the broader neurodivergent community. We are diverse because we do not share all the same strengths and weaknesses, we have vastly different talents and interests. Other factors, such as our upbringing, political factors and our economic status also play key roles in determining our ability to operate within society.
This is why a “one-size-fits-all” approach to housing simply doesn't work.
In this post, I want to talk about the different types of living arrangements that autistic people may find themselves in and I want to discuss why some arrangements may be better suited to various sub-groups of individuals.
There are essentially three major styles of living;
- Independent Living
- Supported Living
- Group or Residential Care
For many, the ideal path is to first explore independent living, as it offers the most autonomy. However, it's crucial to find the option that best fits an individual's unique needs.
It’s also important to understand that with each additional level of care, there is potentially a corresponding reduction in rights, though the best supported care should aim to maximize both support and freedom for individuals.
Independent Living
Independent living is the level of living that most people, autistic or not, would aspire to. It provides generally the greatest freedom of choice and the fewest restrictions on everyday living.
It may seem strange to list independent living on a list of "housing options for autistic people" but there is a good reason for this. Many parents are told by teachers, doctors or social workers that their children will never live by themselves but "that's okay because there are group homes available". We were told this about one of my sons and he has been living happily and independently for several years now.
Don't let anyone else dictate the terms of your living. It's up to the individual.
Independent living is a great option for autistic people who can effectively plan and budget and who are able to cook, clean and practice effective hygiene. Don't worry if you don't have all these skills to start with, you may find that you're a quick learner.
Adults who live independently can rent or buy their own home and are responsible for all of the bills and maintenance. Of course, you can share these costs with others by inviting lodgers or sharing accommodation costs.
The main issue with sharing costs is that you have to be sure that the others that you invite into your situation will treat the property fairly and will pay their bills in full and on-time. This can sometimes become a significant risk because you could risk your tenancy or financial standing because of someone else who isn't as diligent as yourself.
There are lots of great benefits to independent living but the greatest are the ability to choose where you live, to move with your job or family if needed and to live how you want without others dictating the terms.
The key issues are the ongoing high costs, loneliness if you live by yourself and the potential lack of support. If money is not a major issue, independent living is a great way to live.
Supported Living
Supported living is a flexible housing model designed for individuals who want to live independently but require assistance with certain aspects of daily life.
The idea is that an individual lives in their own home, whether it's a house, an apartment, or a small shared home. The support is provided on a "come and go" basis, tailored to the person's specific needs. The residents have individual tenancy agreements and significant control over their daily lives, schedules, and who they live with. Staff are not there 24/7 or in a continuous, live-in capacity.
There are many different levels of support available but these would generally be negotiated by individuals rather then the group. For some, the support might be "privately funded support" which could include family, friends or the individual's own funds. This kind of support can become quite costly over time.
A more affordable type of support is Government Funded. This is available in some countries, such as Australia (NDIS) and the US (Medicaid). Some countries, such as the UK don't have a direct Government funded supported living scheme but instead rely upon a combination of different programs. In other countries, relief may only be available via charity programs.
Regardless of whether funding is from a government scheme or a private source, the support is most often delivered by a paid agency or a professional support worker, who works directly with the individual to meet their goals.
How Support workers can help
While often support is only in the form of financial contributions, support workers can help by attending the home at scheduled times to assist with tasks that the occupant finds difficult. This could range from a few hours a week to daily visits. Usually such visits are short.
While visiting, the support services might help with meal preparation, cleaning, managing appointments, or developing social skills.
Sometimes supported living includes external support services too, such as public transport training and discounts, therapy sessions and financial or legal counsel.
Disadvantages of Supported Living
While supported living offers great freedom to people who cannot afford or cannot cope with independent living, there are also some drawbacks that need to be considered. Supported living is very costly and government support for such schemes can change overnight. There is usually a lot of paperwork associated with qualifying for supported living and audits can occur at short notice.
A change to your residency status, such as having a partner or having your child move out could suddenly trigger a change in your living allowance or could result in you needing to move to a smaller property. You need to stay on top of the rules of supported living.
There are some hard limits to supported living and you may find, particularly as you get older, that you need additional support. If your support needs exceed a certain threshold, it is likely that the support agency will want to transfer you to group or residential care.
One key disadvantage of supported living is the profound risk of social isolation. While independence is a great goal, living alone can lead to a sense of being disconnected from the world. It's important not to confuse this with simple loneliness. Social isolation can carry significant mental and physical health risks.
It is vital that a plan for maintaining connections with friends, family, and the wider community is an intentional and non-negotiable part of any supported living arrangement.
Residential Care
Residential care or "Group Homes" is a scheme that is designed to serve the needs of people who need greater support and potentially greater supervision.
While supported living cuts off with at most, a daily support visit usually lasting under two hours, residential care usually has 24x7 support and often features "live-in" support too.
If someone needs more support than is available under supported living and does not have the option to live with family or friends, then residential care may be the only option.
In Modern residential care environments, placements are not usually based on diagnosis, but on the individual's level of need and their compatibility with the other residents.
This means that an autistic person in a group home may live with people who have a range of other conditions, including; Down syndrome, cerebral palsy, or other intellectual and developmental disabilities.
This is a significant benefit because it helps create a more integrated and diverse environment and quite often leads to residents looking after each others needs as they all have vastly different strengths and weaknesses.
Why Residential care can be great
Residential care avoids the loneliness of supported living and creates something of an "extended-family" effect. This is particularly important for the well-being of individuals who are separated from their families.
Residential care also ensures that support is available when it is needed arises. This is critically important for autistic people who are prone to meltdowns and significant anxiety events, or for when individuals require supervision for medical needs, have a high risk of wandering, or struggle with daily living skills.
The issues with residential care
Like all care systems, residential care is not without its issues, these include, the costs associated with the facilities; though usually these government supported, the potential for mismanagement of care units and conflict with other residents.
No system is perfect but the worst of these issues can be avoided by ensuring that there is an escalation point outside of the care system.
The biggest trade-off is usually a reduction in personal autonomy.
Daily schedules including meals, and activities may be more structured than in other living arrangements. There will often be curfews and activities in the residence may be monitored and adjusted, particularly if they pose a risk to others.
Long-Term Safeguards
It's quite common for elderly parents of autistic children to want to put their children into residential care after many years at home.
This is a good choice for securing their future as children are expected to outlive their parents and having them in a care facility will allow them to build a "family" of supportive peers who may stay with them throughout the remainder of their lives.
It's critical that you also set up good external support for your your child. You can't predict how changes in management of the facility over the years will affect your child or the facility as a whole, so they need an external person to watch over them and to escalate unresolved issues.
The external person will usually be someone younger who may eventually need to take over management and support of some of the funds, decisions and paperwork. You need to choose this person very carefully to ensure that they have your child's best interests at heart.
Person-Centered Planning
For individuals who require round-the-clock support, residential care is often the most common and accessible option. However, depending on funding and services, some may be able to secure full-time care within a supported living model.
If an individual needs only part time care, then you have the two options of supported living and residential care available. If an individual doesn't need support at all, you can choose your style of living from any of the three models.
There are pros and cons with each of the housing options and there is no perfect solution that fits everyone.
Even if you have a wide choice, you should not automatically dismiss the other housing options. Sometimes they will be a better fit for a particular individual.
Some things to think about
- Can you easily get through a couple of days without needing any help at all?
- When you suddenly do need help, do you have someone that would be willing to help out - even if they live somewhere else?
- Do you feel lonely at times and would you prefer to have more people around you?
- Do you value your privacy highly and find it very annoying if another person is in your room or is nearby?
- Do you find perfumes and scents used by other people to be triggering?
- Do you have a car that you can drive - or are you able to use public transport without assistance?
Finding and Funding Options
Supported living and Group living options will vary from one country to another - and they may not be available at all in some countries.
If you are over a specific age, usually around 55, you may be able to get into a retirement home which will provide the same sorts of benefits as group homes.
If you are younger, you will need to talk to local and national autism associations or government disability services departments for assistance.
Don't become too concerned about funding at the start as these organizations are often able to provide funding via government and non-profit organizations.
Concluding thoughts
There is no single perfect housing option but most individuals will adjust to whatever situation they are in. There are no right or wrong answers, only choices that better fit their abilities, needs and wants.
The choices you make are not permanent and you can always change them if another choice seems more suitable. Supported and group living options are usually limited so it's advisable to start the journey sooner rather than later.
Taking that first brave step on the road to your own housing solution is incredibly empowering and it will open doors to new and unexpected places in your life. It's a journey that is well worth taking.
Comments