One of the challenges for many families raising an adult with disability can be the issue of where they will live in the future.
Home might be comfortable, familiar and safe. Parents/carers may have established routines that have been in place for many years that cater to their family member’s needs. When Supported Independent Living (SIL) is mentioned, it may seem like it’s not just about housing.
One of the fears of a parent is what will occur when they get older or are no longer able to care for their adult child. An adult with a disability may feel concerned that the move would be an exile from the family.
It involves having time to explore housing choices, discuss preferences and identify the possible level of SIL Support that may assist an adult with disability in making more choices in their daily life.
It doesn’t take a family crisis for a family to think about alternative living arrangements.
The symptoms can be slow to appear.
A parent might find that giving personal care is becoming physically more challenging. Another family might find that getting the house done, making appointments and attending community events consume a large portion of their week.
While you might still be managing, you may also be asking yourself how long it will last.
That question matters.
The carer’s ability to provide support can change due to factors such as age, injury or changes in circumstances.
Maybe you assist in transportation, moving around, personal care or other physical tasks. Perhaps doing household chores and household tasks are now harder. You must take care of yourself as well.
If you are constantly cancelling appointments, losing sleep or giving up important aspects of your life because you don’t have anyone to support you with, then it might be time for you to look into the possibility of needing extra support.
This isn’t a reflection on what you’re doing wrong as a carer.
Think about what would happen if you just weren’t able to be there.
Who would be a safe person to support your family member? Would someone know their Medical needs, routines and lines of communication? Can they make appointments or care for themselves?
If you don’t understand the answer, your family might want to begin a future plan. Building a support system of family and friends is important but may not be sufficient.
Professional support services can be utilised to make it more stable and to ease the burden on a single person.
The talk should not only focus on what the carer can no longer do. It should also ask the adult with disability what it is that they want.
Independence is freedom to have their own house for some. For others, it means selecting their schedule, picking up new skills or spending more time away from home. This does not mean that the aim is to live without support, instead , it is living at home with the appropriate support in place.
Your family member might want to make more choices about food, play, friendships or what he or she does during the day. They can be disheartened if someone else immediately assumes responsibility for helping. And for parents who have kept their child safe over the years, that can be challenging.
However, choice is a significant component of an adult’s life. An adult with a disability can have increased opportunities to make decisions about their life with the appropriate support that is tailored to them.
Maybe they discuss a brother or sister who left. Perhaps they ask a friend about their apartment, or they’re curious about what it would be like to have their own. They might even discuss sharing a room or housing with other people or ask about how it feels to live with other people.
Rather than giving an immediate response to whether they think it’s a good idea or not, ask what they enjoy about it.
Would they like to share a home? Would they like more privacy? What do they want in their future house?
Their responses can inform the discussion.
Some families report that when they have a respite care stay, or their adult child receives care at a day program, or with a support worker, they find that their adult child is taking on more responsibility.
They might be able to do things less often with prompts or they may be more confident in expressing their decisions. This can occur because they find opportunities to practise in a different setting.
Often parents are helpers who do so automatically because they know what their family member needs. Support can be significant but also may lead to fewer opportunities to build social skills, daily living skills and confidence. This is not to imply that a person should be left alone without assistance.
SIL is one of the many supports that are available in the home and living category for the NDIS.
This will depend on the person’s needs and goals.
For instance, some individuals may have other participants living in their household and have access to support workers. Others might have other arrangements and specific times they need help during the day or night.
Some people may need overnight support. Others may need 24/7 support due to their support needs.
There are also various types of Support models like arrangements like Individualised Living Options.
The mode of housing can be variable. A person can reside in a SIL home, Private rental or other appropriate setting. If a person has the right to claim SDA (Specialist Disability Accommodation) it may also be relevant.
The key is that SIL and housing do not necessarily go together.
The right arrangement will reflect the individual’s situation, objectives, needs for access and support.
If you’re conducting the first conversation, it can shape the entire conversation for your family member.
When someone says to them, “We can’t do this anymore,” they may be told that they are a burden.
Rather, begin with their future.
You could ask:
What’s your vision for your life 5 years from now?
Or:
Looking for an alternative to the usual housing options, would you like to consider some different ones together?
This shifts the focus of discussion from “no” to “what is possible.”
Your family member may not immediately want to discuss moving.
They may require time to learn about what Supported Independent Living is.
Sometimes a visit to a SIL home can be more beneficial than extended talk.
They have the opportunity to view the surroundings and to ask questions, as well as to make judgments about their own likes and dislikes.
There is no need to decide on the first visit.
There are opportunities to become more independent to:
The right SIL arrangement should help achieve these goals, but not be an address change.
It is normal for parents to have mixed feelings. As a parent and primary carer, you can feel relief at sharing caring tasks, but still feel guilty about that relief. You might even be thrilled that your family member is going to be more independent, but also concerned about whether they will be safe. You can also experience sorrow over the transformation of the family house.
It may be helpful to talk to your own support system, partner, friends or professionals and to share your concerns, instead of relying on your adult child to do that. Try not to let your own sadness become something your family member feels responsible for managing.
Brothers and sisters also may have questions regarding the future care of their parents.
They might feel they will suddenly have to take on responsibility for housing, appointments or routine care.
Earlier discussions about plans can alleviate this uncertainty.
It can shield family relations as well.
It’s not about becoming a brother or sister, it’s about having help from a professional support team for the day-to-day help needed.
That team may include support staff, health professionals and others who work with the individual in their care.
SIL planning can take time – one of the best motivations to start early.
The family might need to get to know about what SIL funding is, look through the person’s NDIS plan and ask for assessments and talk about supports for home and living.
They may require input from other health professionals, such as occupational therapy, Allied health professionals, Social workers or others depending on the individual.
Provider waitlists and home vacancies might be a factor.
SIL funding is based on the support a person needs to live independently and not only on the cost of a house.
The person’s NDIS Plan and supports and what is agreed with them must also be taken into account when determining their living arrangement.
This could be Core Supports, Core Budget or Capacity building Supports, depending on their individual plan and goals.
A Support Coordinator can support a participant to understand how their supports fit together and may provide assistance in the planning process in support coordination.
How funding is used and arranged will vary based on the individual’s situation and their NDIS plan.
Professional evaluations can help to better understand the type of help a person needs.
Functional capacity and activities of daily living are examples of areas that might be explored in occupational therapy.
Other professionals may give information relating to communication, behaviour, health and mobility.
Where Behaviour Support is included within the person’s support plan, this can also be a factor to be taken into account when considering an appropriate living arrangement.
The intent is not to label someone.
To understand the needs they have so that the appropriate support can be arranged.
You should not make a decision on which SIL provider to choose based solely on whether they have a room available.
Reflect on their attitudes towards options and care.
Ask:
Answers will give you an idea if the provider’s approach is appropriate.
It is also possible to enquire about the kinds of homes available such as shared apartments or other forms of support.
Often families think that the primary step is finding a house.
It is not.
Home must be designed to serve the person.
This involves taking into account the accessibility, location, relationships, routines and support type.
Supported disability accommodation may apply to some of the participants. For some, affordable or social housing or a private housing unit could be a component of a housing plan.
There are different types of social and affordable housing and Specialist Disability Accommodation has its own eligibility criteria.
The housing and support should be separated if possible and a SIL provider may support in a specific house.
Families should also check with organisations like Endeavour Foundation for information on disability support and living options, and to think about what is the best way to meet the participant’s goals.
You don’t need to know what the future will look like before starting research.
The first step is to talk to the Support Coordinator, LAC or another person in the person’s support network.
Discuss what needs to be taken into account for Home and Living supports and whether assessments are appropriate.
There’s also a way to reach an occupational therapist and inquire about wait times.
Contact one or more SIL providers.
Tell them honestly:
“At this point, we’re just looking into our options; we haven’t made a decision.”
That should be fine for a good provider.
See a home, ask questions and find out what support services are available to a person without committing to moving.
Your grown child might require additional time.
There is a need for a better understanding of their NDIS plan.
For the family, respite may be an option.
It’s possible you just want to keep looking for alternatives.
That is okay.
Not moving doesn’t mean you are not prepared.
Information can be collected now and decisions made later.
What’s the key difference? Delaying is one thing, and waiting until a crisis strikes is another.
There is no specific age set apart from an adult living with disability to start SIL. The right time is dependent upon the individual, their goals, their needs and their situation.
However, if you have begun to wonder what will happen if you can no longer take care of your child the same way you once did, that is something you should consider.
If your family member is looking for more independence, listen to them.
That’s important if the current situation is becoming difficult to maintain.
There’s no need to make a decision today.
Start by talking.
Find out what’s available.
Visit a home.
Ask about support.
Know the funding procedure.
Provide a family member with the opportunity to say what happens next.
Planning early doesn’t eliminate the choices. It can increase their numbers.
Then, when the time does arrive, your family will have a plan to move forward rather than trying to develop a plan in the midst of a crisis.
Supported Independent Living can be unique to each person.
It can be co-ordinated tenancy with regular assistance for some. It can be a different kind of living arrangement for some with tailored support to achieve their own objectives.
The important thing is to start with the person.
What do they want?
What can they do?
In what areas do they require help?
What kind of help would they need to make their lives what they desire?
The next steps may be determined by those questions.
Our team supports NDIS participants throughout Western Sydney, South West Sydney and further afield, if your family are starting to look at SIL.
We can help you know what exploring SIL may require and answer your questions about this, and explain the options.
Call 1300 271 824 to start a conversation.
There is no obligation to make a decision. The first step is just to learn what can be done.
This is a general statement of information only and should not be relied upon as a substitute for personal advice from the NDIS, occupational therapy, legal or other professionals.
1300 271 824
