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Eli’s Microboard Story

By Jaquie Mills (Eli’s mother)

Eli’s microboard is called Blazing Condor Soul Explosions Inc (BSCE).  Eli is a bit of a character as you can see from his Microboard name.  His microboard was the first Vela Microboard in Australia.  Members of BCSE Inc include family, friends and former support workers.

When Eli was in high school I really started to worry about how I would be able to continue to support Eli to live an ordinary life in the community.  In 2006, myself and my partner Darryl flew to Baltimore in the USA to visit another family who had a son with Angelman syndrome and a microboard which had helped them to set up a good life for him.  On our return, I set up a circle of friends around Eli and then worked in partnership with the Disability Services Commission and Perth Home Care Services (now Avivo) to develop the Microboard model with families in Western Australia.

Eli’s microboard members include Eli in their own lives.  Microboard members Coral and her husband Jason and brother Joe are keen footy fans and they wondered if Eli would like to come along with them to the football each week.  Eli had never been to a football match and it turned out that he loved footy!  Eli doesn’t speak so when the other team scores he does the sign for “dickheads”!  He has now been going for many years and is well known at the Bayswater Football Club.

As for many people with disability, accessing medical care safely can be tricky for Eli. His microboard members at times attend medical appointments and treatment with him. It makes a difference when the person has a group of people around them who care about their wellbeing.  One of the microboard members did an over night shift with Eli when he was in hospital.

Eli communicates using a PODD book.  Coral designed these communication boards for Eli’s PODD and prints and laminates them as well as his schedule and other resources.  Microboard member Sophia programmed PODD for Compass on his IPad.  His other microboard members have learned to use the PODD and help model how to use it with Eli.

Eli’s microboard decided they wanted to do a trip with Eli to the Gold Coast in Queensland.  We needed a large vehicle to accommodate Eli’s wheelchair and other equipment for the trip. Hiring this vehicle was going to be costly so we decided to do some fund raising.  BCSE developed a relationship with Eli’s local Coles store through BCSE member Jason who works there.  They provided us with some buns and sausages and the microboard ran a couple of sausage sizzles to help pay for the vehicle hire.

When we arrived at the Gold Coast the microboard members supported Eli to ride a roller coaster safely.  We knew it could be potentially dangerous for Eli as he has a number of medical issues.  So the microboard members tested out all the rides and rated them from safest to most risky.  They also problem solved how to keep him safe on rides – sitting him in the middle so his arms didn’t move outside the carriage and things like that.  While he didn’t go on any of the highly risky rides he had a fantastic time on some of the smaller ones.

Vice chair of BCSE Liam is a pool guy, which comes in handy now Eli has a spa at his house.  Liam checks the chemicals in the spa every fortnight. He also checks in on how the house is going and shares any concerns with us and the microboard.

Luke is a member of our local State Emergency Service. He makes sure we have the right fire equipment and evacuation procedures.  He enjoys writing safety policies and procedures.

Luke and his SES buddies that help us with health and safety

Luke and his SES buddies that help us with health and safety

 

Eli and Coral watching the game at the Bayswater Football Club

Eli and Coral watching the game at the Bayswater Football Club

 

Eli's microboard members support him in hospital

Eli’s microboard members support him in hospital

 

 

Microboard Meeting

Microboard Meeting

Jason and his son Eddie practicing using Eli's PODD book

Jason and his son Eddie practicing using Eli’s PODD book

 

Eli and his microboard members raise money to hire an accessible vehicle for their holiday together

Eli and his microboard members raise money to hire an accessible vehicle for their holiday together

 

Eli rides the roller coaster with his microboard members

Eli rides the roller coaster with his microboard members keeping him safe

Liam the pool guy and microboard member who checks in with Eli at home

Finding Grants to Support Your Microboard Projects

Has your microboard got an ingenious project idea?

Not got enough funding to cover costs?

One of the great things about being a Microboard is that you can apply for an ABN and be more attractive to grant funding bodies. You might find one of your Microboard members is a dab hand at writing grant applications too.

The Grants Hub is a great grants search directory website. There are over 1,200 open grants listed with more than $800 million currently available. You can search the directory yourself or you can pay a consultant to put together a grants calendar of  suitable grants for your microboard project.

Here is a sample grant application Isaac’s Microboard have put together that might help you.

Have you already come across some great grants and been successful?  Let other Microboards know about them on our Discussion Forum.

Becoming a Responsible Employer

Employing your own staff has many benefits:

  • You can employ staff who are the right fit for your son or daughter – similar interests, personality and the right skills.
  • You can get greater stability and consistency of support workers so your son or daughter doesn’t have a stream of different workers coming through the door.
  • You can save money and invest what you have saved into things like training.  This is because when you are paying an external agency you are paying their rent, electricity, IT systems and the like.  When you self employ your staff you don’t need to pay for those things.

For our family, the greatest benefit of self managing our son Isaac’s NDIS plan has been the ability to recruit and manage the right staff.  Being in charge of our own staff has led to great leaps in achieving Isaac’s goals for a good life. In the past, planning and building a good life for him has been made frustratingly difficult by not having the right supports.  He has such great potential for work, being a friend, being a housemate, being a community volunteer and more but to make that happen we needed support staff with a specific skill set, values, interests, personality and commitment.

Before the NDIS we were forced to use an agency to provide support workers for Isaac.  Their support workers were often students wanting to make a bit of money to survive student life.  Just as Isaac started to get to know them and have some predictability in his life their timetables changed and they would become unavailable.   When new staff began working with Isaac we would be lucky to get a single shift handover before they were stripping Isaac off to get into the shower.  They would also invariably be completely inappropriate – not the right skill set, too old, no shared interests and so on.  Isaac would be subjected to stripping naked in front of people he couldn’t relate to or communicate with, with whom he had nothing in common and didn’t like who disappeared at the end of semester.  Sending a 54 year old woman to support Isaac to hang out at the local pub to listen to a live band was the straw that broke the camel’s back. It was an unacceptable life for us all.

We were worried about how much work that would be. But the thought of eliminating the frustrations of working with hopelessly mismatched support workers and giving Isaac back his dignity and some predictability in his life helped us to be brave and give it a go.  At least this work would be positive work where we were actually empowered to make Isaac’s life better.  We learned how to:

  • Obtain an Australian Business Number – ABN
  • Apply for a Tax File Number
  • Register for PAYG withholding & BAS Statements
  • Obtain insurances – Public liability & workers compensation insurance
  • Develop a Policy Manual
  • Understand which Modern Award to use to pay our staff under and ensure we were familiar with other working conditions under the award.
  • Do checks on Working With Vulnerable People Cards, Vehicle Insurance and Drivers Licence.
  • Write Employee Contracts

One of the Directors of Microboards Australia – Darryl Edwards – has many many years experience of running his own business and employing staff and Sheree has experience of employing her own support staff with NDIS funding.  So we have put together a mentoring package for families on how they can employ their own staff which can be paid for using NDIS funding.  Contact Us for further details.

Top Tips for Creating a Job Advert that Attracts Great Support Workers

Like in any profession, there are great support workers and there are ordinary ones.  If you check out some of the adverts for support workers on www.seek.com.au you will soon find that in many adverts the only requirements are qualifications in disability care, a working with vulnerable people card and a drivers licence.  Job adverts like this don’t inspire great people to apply as great people are looking for great opportunities.

Here are our top tips for writing a great job advert to attract great people……

Tip #1: Include an interesting description of the person to be supported.

Describe what the person to be supported likes to do for fun or what they would like to be able to do.  This will attract people with similar interests and having similar interests is great for building good relationships.  Having a good relationship with the person who supports you is vital for good support.

Examples

I love music, disco lights and live gigs. I also love the sun and being outside. I’m fascinated by anything which has moving parts, and I think cruising around in the car with the music cranked up is pretty cool. I’m into being both physically and mentally active. I’m really enjoying drama classes right now, being on the stage and being the centre of attention.

People say I’m very charming and a smooth operator. I’m determined, and curious. I’m a Leo and that describes me perfectly! I was also born in Yorkshire which might be why I’m proud, and stubborn.

I’m soon going to be leaving school, so I have started doing work experience which delivers magazines to waiting rooms. I’m hoping to develop this into a mail delivery business.
I also have a disability and need help to achieve my life goals.

Tip #2: Use colour that reflects the personality of the person to be supported.

The look and feel of an advert is also key to attracting the right kind of person.  The look and feel should make people reading the advert feel a certain way.  Colours can make us feel different emotions.  Think about the personality of the person to be supported and their personality and choose colours that align with them.

Examples are:

  • Edgy and cool – black and white
  • Playful and energetic – orange
  • Happy and friendly – yellow
  • Easy going – blue
  • Mysterious – purple
  • Outdoorsy – green
  • Passionate – red

 Tip #3:  Include a photo

Include a photo of the person to be supported doing their favourite activity to highlight the fun and interesting things about them.  Ideally the photo should be a closeup shot that shows them enjoying the activity.  This will again help create an emotional response to the advert and help you attract the right kind of person.

Tip #4:  Describe the personal characteristics you are looking for

Think about the person to be supported and their personality traits and consider what personality traits a support worker should have to increase the likelihood of building a good relationship. Also think about the person’s goals for the year and the kind of person that could help them achieve those goals.  Here are some examples…..

Check out this list of personality traits to find ones that best describe what you are looking for.

Here are some examples:

respectful in your relationships with others
a good relationship builder
reliable
confident
interesting
a fast learner
an excellent communicator and listener
well organised
able to take direction and follow through on tasks on time.
able to show initiative
a team player

Tip #5: Include a list of interests

Having a common interest can improve the likelihood of a good relationship with the support worker and can also bring about opportunities for developing further relationships with others who have a similar interest.  Include a list of interests that would make applicants ideal candidates.

Tip #6: Describe the nature of the role

Make sure you include the basics:

  • Part time or full time
  • Shift times and activities
  • Pay rate
  • Superannuation benefits
  • Other bonuses – opportunities to travel, do training and so on

Also include the above and beyond the basics stuff like that you will need your support workers to do. Examples are teaching, mentoring, using technology, networking, conflict resolution and so on.

It’s ok to be creative and intriguing!

Examples are:

Are you the…mentor, life coach, Personal Assistant, Isaac is looking for? Are you a creative and resourceful teacher, guide, right hand person?

Are you looking for…..a job which stretches your boundaries, where you work outside the box, which explores new territory…???? Kind of like working for Google?

Are you a teacher with creative genius who wants to walk on the wild side?
…a free-spirited 18 year old young man.

Tip #7: Describe Your Microboard’s Culture & Role

It’s important to include a description of the Microboard, it’s culture and role so that potential employees understand who will be their employer and what it’s like to work for them.

Explain what the purpose of the microboard is and what your microboard is like.

Example:

My microboard – Isaac’s Band of Brothers & Sisters – is hiring a small team to help me experience university life, set up my small business, get fit and improve my literacy and communication. “The Band” is a caring, focussed and fun bunch of friends who are skilled professionals  committed to helping me have a good life.

Tip #8: Include details on how and when to apply

Make sure you include instructions on how to apply.  You can also be creative here.  Asking candidates to submit a two minute video explaining why they want the job can help you weed out those that are not serious about the job, have technical skills and the confidence you may be needing in a candidate.

Alternatively you can ask them to send in a CV and a statement that describes how they meet each of the criteria you have listed in your add.

Examples

How to ask people to join your microboard

Asking can be scary. See our article on how to overcome this.  It can make you feel needy and vulnerable. This article will give you some tips on asking so that you will feel more confident.

Tip No 1. Believe that asking is the right thing to do

If you believe that asking is not the right thing to do then that will make you fearful. In a previous article I shared 5 Reasons why asking people to freely give their time to be involved in your son or daughter’s life is a good idea. Read through them to counteract any beliefs you may have that what you are about to do isn’t right.

Tip No 2. Know why you are asking

Your reason for asking needs to be more than just “because I want to set up a circle.” Circles are just a means to an end. What is it that you would like to achieve for your son and daughter through a circle? Do you want to help them to make some big decisions about their life? Help them find a job? Help them make friends? Some other reason? If you want to ask someone to come on a trip with you, they will want to know where you are going in order for them to be able to make a decision whether to join you or not.

Tip No 3. Who will you ask?

This can also be a tricky thing to work out. A good way to start is to write down all the places your family members go during a typical week and then make a list of the people you each know in those environments. If you don’t know them very well, spend a few weeks just chatting to them to get to know them. Find out what their interests are, what they do for a living and about their family life. Let them do all the talking.

Next, think about the kind of people you would like in your circle – people with similar interests to your son or daughter, people who have useful skills eg social networking, business, teaching etc, people who are fun and friendly and so on. Then from your list choose who you could ask. Remember that we are all busy. Often the busiest people are the best to ask as they like to get involved in life.

Check out our People You Know in the Places You Go tool to help you identify who to ask to join your Microboard.

Tip No 4. Practice asking

Being able to ask for help is an important skill for all of us. Start practicing it at home, at work, when you are out and about. Ask for little, easy doable things. Could you please help me set the table? Could you please help me find my keys? Could you please help me clean the office?

Tip No 5. How will you ask?

I think this is the key. If you get this part wrong people are less likely to get involved. Avoid doing the Big Ask eg “will you help my son find a job” is too big an ask. People are often happy to be asked to do a small support role that is easy, fun and achievable. You do not want to imply that you are asking the person to take care of your son or daughter for the rest of their lives! So the first ask may be “My son finishes school next year and I’m keen for him to find a job. I’m having trouble thinking of ideas so I thought I’d invite a few people over for afternoon tea to brainstorm some possibilities. Would you be interested in that?” You might ask over the phone, face to face, or send a little afternoon tea invitation. Make it personable and fun.

Remember to avoid the Big Ask. Keep what you are asking for small, simple and a reasonable expectation. You might have come up with a list of ideas in your meeting so at the end of your meeting you might pick one of the ideas and break it down into small stepping stones.

For example, one of the ideas might have been for your son to work in a newsagent because he loves magazines and keeping things tidy. One stepping stone might be to scout around some local newsagencies to find one that has a good feel about it and is a suitable environment for your son to work in. So a small ask might be, when you next go to your local shops to do your shopping, could you check out the newsagent and see if it might be a suitable place.

Asking one person to get in their car and spend several hours checking out newsagents would not be a reasonable thing to ask. Asking all of the people to just add this extra little thing to what they are already doing is reasonable.

Tip No 7. Be patient and celebrate the little things

If you are like me, you will want things to happen straight away. They never do. It’s important to be patient. Building a good life for someone takes time. This is very slow work. Hang in there. Keep your long term dreams in mind but celebrate the little achievements. Finding that there is a newsagency in your community that has the right environment for your son to work in deserves celebrating, even though this is just the very first stepping stone in a long line of them that need to be done.

5 reasons why asking for help is a good idea

Asking for help can be challenging.  You don’t want to impose, you feel it is your responsibility, you don’t know how to ask. Here are some things to keep in mind to feel confident you are doing the right thing by asking…..

1. Because social isolation is bad for the health of all people

An article in the Australian Newspaper reported on a scientific review of 148 previous studies involving more than 300,000 people. This review found that those with adequate social relationships were 50 per cent more likely to be alive after an average follow-up period of nearly eight years, compared to more socially isolated people.

2. Because when the community is denied the opportunity to include people with disabilities, they cannot learn how to include them

One of the major reasons why individuals with a disability are often excluded from community is that we have simply failed to ask.

Many of us feel that our son’s and daughters who have a disability are our responsibility and asking other family members, friends and neighbours is asking too much. Its also a commonly held belief within the community that inclusion is the responsibility of paid service providers and not the community itself.

3. Social capital provides you with access to resources

Significant opportunities can arise when you are connected to the community. These opportunities arise from social capital. Social capital provides you with resources through your networks such as information, ideas, leads, business opportunities, financial capital, power and influence, emotional support and so on.

When we don’t ask the community to be involved in the lives of people with disability, they are denied these opportunities. Asking is actually an essential tool for all people not just for those with a disability.

4. Having friends keep our sons and daughters safe

People with disability have an increased risk of being subject to abuse due to a range of factors, such as limitations in communication and physical ability, cognitive capacity, shared accommodation facilities, increased social isolation, and dependence on others for personal care and support.

Abuse and neglect can of course occur in the community or at home but the belief that a person is safer with a paid professional is unfounded.

All of us hope that professionals in the disability sector have a strong moral compass and work hard to support quality of life of people with intellectual disability. This is not always true and our family members can still be at risk from abuse.

Abuse is not always one off serious incidents. It can be small seemingly insignificant actions that occur over a long period of time. For example not placing a person’s communication device within reach or leaving it behind when going out – leaving them without a voice.

With the coming of the NDIS the climate is increasingly focussed on funding and paying for professional support. In such a climate it is important to remember that what actually creates safe and secure futures for our sons and daughters is social connection and freely given relationships.

Friends know our sons and daughters well. They know what makes them happy, when we are in pain or when their needs are not being met. Friends keep an eye out for our sons and daughters and can advocate for them. A friendship network can assist the family to safeguard our son’s and daughters.

It is extremely important that this network of friends and family all follow a set of values and principles that help safeguard your family member and guide their actions to ensure your family member is safe, is included in the community and is given choice and control over their own life.

5. Because you can achieve more for your family member with help

As previously mentioned significant opportunities can arise when you are connected to the community. Having a network of friends who can assist you to find out information, generate ideas, investigate leads, identify employment opportunities, provide emotional support and so on lightens the load on the family.

Don’t know who to ask?

Read this article on how to find people to ask

The values and principles that drive the actions of Microboards

Every microboard will be different.  They will meet in different ways, have a wide variety of kinds of people involved in them and do different kinds of work because the people at the centre is a unique person. But there are common values and practices that must underpin the work that they do or there is a danger of impinging on the human rights of the person with a disability at the centre.

Vela Canada who established Microboards in 1989 and are now supporting over 1000 Microboards and provide guidelines for best practice.  The Canadian experience has shown that Microboards can be made up of people who may be loving and caring, who are trying to do the best for the person at the centre of the Microboard yet they can still unknowingly and unintentionally do things that don’t support the person at the centre’s human rights.

To protect these folks with disability at the centre of Microboards they have developed and implemented these non negotiable values and principles.

My own son’s Microboard makes every effort to put the values and principles of Vela into action.  We are not the perfect example of a Microboard and we make plenty of mistakes. I say this to encourage you to just get started if you are thinking the Microboard approach might be the way to go for your family member.  Here are the principles that will guide you and help to safeguard the human rights of your family member.

Microboard members must establish and maintain a personal relationship with the person for whom the board or group is created.

All the people in the Microboard or circle of support need to get to know the person at their centre well by spending time with them, observing and listening carefully to the person. This helps them to become more familiar with the likes, dislikes, skills, hopes and dreams of the person at the centre of the circle or Microboard and become better advocates for them.

It isn’t necessary for all members to know the person well before they can be invited to join but they must work towards getting to know them.

When my son’s Microboard first formed as a circle of support I spent a lot of time helping them get to know him.  I did this by modelling how to interact with him at social functions, answering any questions they had and highlighting the things that he liked and didn’t like.   I had to be very mindful that when someone offered to help or hang out with him that I didn’t say no, its ok I’ll do it.  I needed to let them into his life. That took about two years.  This stuff doesn’t happen quickly.

All people are assumed to have the capacity for self-determination. This capacity will be acknowledged, respected, and demonstrated in all of the dealings of the Microboard.

For people who have complex communication needs Microboard members need to understand that just because a person is unable to speak this does not necessarily mean that they have nothing to say or do not understand.  Their bodies may not let them respond in a way that others look for as an indication of understanding and  this can lead to wrongly labelling the person as not been capable of understanding.

There are many examples of people who have been unable to speak that have still been able to understand – two well known people are Helen Keller and Carly Fleishman.

Members need to assume that the person has the competence to learn to be involved in the activities of the circle or the Microboard.  It doesn’t mean focusing on the person’s capacity or lack of it.  Rather it’s about focussing on teaching the skills and providing the right support to learn to make decisions and be involved. Learning to be involved in decision making may take several years or even a life time.

My own son often doesn’t even want to be in the same room when we have Microboard meetings!  So we are gradually working on activities that encourage him to be in the same room.  We will then work on talking with him using his alternative communication method about some of the things we are talking about.  I also talk about these things with him after meetings. We also observe Isaac’s reaction to decisions that we have made over a period of time to see if he is happy with out decision.  If not, then we reverse it and go back to the drawing board.  I can’t tell for sure if he understands or not but assuming he can learn does less harm.

All planning and decisions made by a Microboard or Circle of Support will demonstrate regard for the person’s safety, comfort, and dignity, with consistent respect for his/her needs, wishes, interests, and strengths.

This is called person-centered planning. Our sons and daughters with disabilities can be very vulnerable to physical injury, neglect, abuse, social isolation, not being heard, being taken advantage of and feeling unsafe which can lead to anxiety and challenging behaviour. Like all parents I want to protect my son from these things. Bringing other people into our children’s lives can be scary.

It is important to welcome ideas from Microboard members to encourage their confidence and participation. Ideas are never immediately dismissed on the grounds of being too risky.  However we always work through what the risks to my son might be in terms of his safety, comfort and dignity and see if we can come up with safeguards to prevent or manage these risks to a level that is acceptable.  If we can’t do this then we move on.

An example of how my son’s Microboard is working towards keeping him safe is his medical emergency plan. My son is particularly vulnerable when he is in hospital.  Medical staff are often very unfamiliar with dealing with people with disabilities and may inadvertently make him feel very anxious, give him inappropriate food or medications or even miss diagnosing serious health issues.  His Microboard is currently working on a medical emergency plan so that if he goes into hospital there will be a group of people who can inform the medical staff of how best to support him and it isn’t just left to his parents.

Microboard members will act as sponsors to the community, ensuring the person participates in community activities with Microboard members (e.g. family functions, social events).

This is done in ways that are natural for each of the people involved and needs to be done in a light touch way.

This looks like Microboard members introducing the person at the centre of the circle in light touch ways and slowly building up social connections.

You also cannot roster your friends.  They are not your work team members so you must be mindful of how they would like to contribute.  It just doesn’t work if you assign time consuming tasks that are not in their skill area.  Get to know their lives and their skill areas slowly so that you know that you can ask if they might like to do some easy things they can do that will fit into what they are doing anyway.

A good exercise which we have done recently is to ask members what they feel their legacy might be when they leave the Microboard.  It helps them articulate what they feel their contribution could be and makes them feel that its ok and expected that they will eventually leave the group.

Building social connections also requires a light touch.  Asking people straight away if they could be your child’s friend when you have only just met them will probably make them run a mile.

Recently one of my son’s Microboard members and some of her friends went to Floriade with my son.  She had talked with her friends many times previously about Isaac, showed them photos and talked about the fun things they had been doing on Facebook. She built up their interest in meeting him slowly.  She eventually asked if they would like to join her and my son in an outing to Floriade – they all said yes!.

Ensure the person has the opportunity to both receive from and give to his/her community, as well as with other individuals in his/her network.

Reciprocal and interdependent relationships is the glue that keeps circles and microboards together. You are not trying to build a series of one off relationships.  You are trying to build a group that is much like a family.

We are exploring ways that Isaac can give back to the members of the circle and to others in the community.  He sometimes collects people’s mail when they are away and feeds their pets.  At meetings he will carry out the tea and coffee and greet people as they arrive.

The Power of Friendship

Forbes writer Meghan Casserly looks at research on how friendships impact our physical health the article Friends With Health Benefits, finding that our social connections play a bigger role in health than researchers previously thought. Read More »