SAFE AND SECURE

Geraldine Graydon finds that the concerns of parents of people with Autism can be eased by communication, coming together and trust.

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Geraldine Graydon - Safe and Secure
  • What does the future hold for our relatives on the autism spectrum? This is the elephant in the room.
  • A Personal Future Plan is a process a family can follow to create a safe, secure and pleasant future for their relatives with disabilities.
  • It is a plan that you create, control, and direct. It is focused on the here and now. It is also geared to a time when you will no longer be around.
  • “I am a sailor in my dreams, I travel from land to land.   My heart is a compass I will never be lost.” – Liz Etmanski
  • What keeps so many of us from even thinking about the future is fear.   According to Al Etmanski, love and fear are two sides of the same coin.
  • Do not see me as your client, I am your fellow citizen.  See me as your neighbour.  Help me learn what I want to Know.” – Norman Kung.
  • Worrying about the safety and security of our loved one is a major cause of stress and anxiety for parents.
  • To support your loved one to make good decisions you need to ask the following questions:
  1. What choices do they have now?
  2. What experience do they have with decision-making?
  3. What decisions can they make independently?
  4. What decisions will they need help with?
  5. What informal arrangements can be made to assist with decision-making?
  6. Would they benefit from a Representative Agreement?

Many of us never find the time to sit down and discuss what our future intentions are for our relative on the autism spectrum; nevertheless, it is the elephant in the room. It is always at the back of our minds.  However, from time to time it pops up, maybe you can’t get to sleep, or you wake up during the night and decide it’s time to talk about it. Lots of thoughts, ideas, worries or concerns go rolling around in your head but the opportunity to tease these out never seems to happen. Does this sound familiar to you? Most of the families I have worked with have expressed this overwhelming experience – there are so many confusing messages, countless pieces of advice and actions required to prepare for the future. When your child on the autism spectrum reaches adulthood, parents are pushed aside by state agencies and service providers, and parents are no longer consulted with or supported during this time of transition. My work with families has convinced me that there is a need for a process that is not complicated, to assist families to engage in developing a Personal Future Plan for their relative on the autism spectrum.

According to Al Etmanski (Founder of PLAN in Canada), a Personal Future Plan is a process a family can follow to create a safe, secure and pleasant future for their relatives with disabilities. It includes the best of your experiences, your dreams and nightmares, your wishes for the future and your knowledge and expertise. It combines all of these with the active involvement of your relative with a disability, other members of your family and selected knowledgeable professionals.

It is a plan that you create, control, and direct. It is focused on the here and now. It is also geared to a time when you will no longer be around.

“I am a sailor in my dreams, I travel from land to land.   My heart is a compass I will never be lost.” – Liz Etmanski

Remember the old saying: If you don’t know where you are going, any road will get your there?  This is why we parents need to begin planning for the future, because any road will not get you there.    Families need to be clear about what we want for our loved one on the autism spectrum. We also need to be very clear in what we are trying to achieve. What are our goals? What do we want to prevent? To Maintain? What do we want people to know when we are no longer around? Without specific answers to these questions, the future of your loved one will be cloudy and incomplete.   Knowing what you want to achieve is the first step in creating a Personal Future Plan.

What keeps so many of us from even thinking about the future is fear.   According to Al Etmanski, love and fear are two sides of the same coin.  The coin is called passion.

Fear is an intriguing emotion. Fear distorts our perception and confuses us about what is going on and about what is possible.  When we use words like can’t, ought to, if only, doubt, and impossible, we are under the influence of fear. Fear draws a dark and cold curtain between our intentions and our actions; like a schoolyard bully, its appearance is deceiving. It’s actually more imposing in our minds than in reality.

One of the strongest fears we experience is the fear of opening up, as sharing our hopes and worries means discussing intensely personal matters with others. We have had to become self-sufficient, we have shouldered our responsibilities to ensure others wouldn’t have to, we have done the best we can. When you engage in future planning you have to share your hopes, your dreams, your fears and your anxieties with others. We have to ask others to help us with our planning, carry out our wishes after we are gone and believe in our loved one and the possibilities for their future. What good are our plans if no one else knows about them. How will they get the complete picture, know what we really wanted for our loved one?

Another fear is the fear of making a mistake, for most of us we feel we need to create the “perfect” plan or that we may not have covered all the bases. According to solicitors, accountants, involved in the future planning business, the most common excuse for not making a Will is the fear of not getting it right.  Indecision can paralyse even those with the best intentions. Future plans will change as circumstances change. It takes time for your dreams to evolve, you should always update and revise the future plan for your loved one, hindsight is the only guarantee of perfect vision.

Do not see me as your client, I am your fellow citizen.  See me as your neighbour.  Help me learn what I want to Know.” – Norman Kung.

Worrying about the safety and security of our loved one is a major cause of stress and anxiety for parents. On one hand we want to protect our son or daughter from discrimination, exploitation, abuse, neglect and injury, but also we want them to have a good life. A life where they enjoy themselves, where they get to try new things, where their choices are respected. We as parents want to teach our autistic children how to survive and work through adversity. We want people to recognise their ability to make decisions, and to support them to make sound decisions. Parents face a very delicate balancing act in keeping their loved ones safe while at the same time respecting their choices.   This is a tough challenge for everyone – families find it difficult, service providers find it difficult as do governments and their agents.

In other countries they have developed a legal option which enables adult family members to get the support they need in order to make good and safe decisions without taking away their decision-making power (thereby depriving them of their rights as citizen) – this is called a Representation Agreement Act. As parents we want the people involved with our son or daughter to see what we see, a person capable of making their intentions known. We want them to be patient, willing to listen, to watch and if necessary be willing to learn our son or daughter’s unique and perhaps non-verbal communication style. We want our loved one to be surrounded by people who will take the time to search for that meaning. Once there is a recognition of their choice-making ability, we can then focus on supporting them to make decisions. However, this may mean in certain circumstances, speaking or making decisions on their behalf; for example, we do this when we set up a joint bank account or when we accompany them to a medical appointment. This type of supported decision-making is formally recognised in Canada when the person with a disability makes a Representation Agreement.

There are three areas of decision-making that affect our relative’s life – health or medical decisions, financial decisions and personal care decisions having a representation agreement is critical to each.   To support your loved one to make good decisions you need to ask the following questions:

  • What choices do they have now?
  • What experience do they have with decision-making?
  • What decisions can they make independently?
  • What decisions will they need help with?
  • What informal arrangements can be made to assist with decision-making?
  • Would they benefit from a Representative Agreement?

When we worry about the future, we want to put enough money aside to handle emergencies and unforeseen circumstances. However, most of us are not sufficiently wealthy to leave enough money to our loved one.  However, we are acutely aware that our loved ones will not be able to rely on the government benefits continuing if we supplement their income without these benefits being clawed back. The only way to avoid this is to make a Will and to set up a Discretionary Trust for them.  Where there is a Will there’s a way.  A Will is a legal document that tells people what to. It makes life easier for those left behind by providing a plan for them to follow and by naming who is in charge.

According to Al Edmanski, to achieve a good life and a secure future for your relative requires careful attention to a number of key items:

  • A vision with as much detail as you, your relative, and close family and friend can muster
  • The ongoing involvement of caring, committed friends and family
  • Control over the home environment
  • Appointed Representatives to assist with decision-making
  • A properly drawn and executed Will
  • A financial strategy, including a discretionary trust
  • Sensitive and caring trustees who know your family member
  • How you want to divide your property and financial assets
  • Which relative, friend, or other person might be a trustee or co-trustee on the discretionary trust
  • What service you may want from a solicitor, accountant, and financial planner
  • Where they might live
  • How they will make their contribution to society
  • What might be put in place to keep them safe
  • Who might serve as an advocate and monitor
  • What role your other family members might play

The biggest challenge for us parents as we age is to make the necessary arrangements for our son or daughter on the autism spectrum to have a safe, secure and comfortable life beyond our lifetime.  This is an immense challenge, because none of us knows what the future will be like? If you are like me, you have a nagging concern:  Who does what I do, keeping an eye on everything? Who will be my eyes and my ears?   Who will monitor the plans I have made? What is plan B?

The answer is quite simple: we parents must work together to create trust with other parents in similar circumstances.  This cannot be done by anyone else but us – the state will never provide for this, it is up to us parents to lead this process. It was for this reason that I and a few other parents this year set up AsFan (Autism Spectrum Family Advocacy Network) so we can share our strength, expertise, and know-how.   It is our aim to assist families with planning for the future and developing personal networks. We are offering both personal advocacy for individuals and families and public policy advocacy to improve the lives of all people on the autism spectrum.

References

Etmanski, Al.  Collins, Jack. Cammack, Vickie. (2009) Safe and Secure-Six Steps to Creating a Good life for people with Disabilities: CA  PLAN-Planned Lifetime Advocacy Network

Acknowledgements

Our thanks to Al Etmanski and Vickie Cammack, founders of PLAN (Planned Lifetime Advocacy Network) for their vision, insight and for sharing this with us here in Ireland.

Geraldine GraydonGeraldine Graydon MSc, Dip. Advocacy, I have lived with autism all my life – my father, son and grandson are on the spectrum.  I have been an Autism Advocate, worked as a Transition Coordinator, Coach, Mentor and Trainer, in a voluntary and professionally capacity for over 25 years.  Co-Founder of AsFan (Autism Spectrum Family Advocacy Network) in 2017.  AsFan is a not-for-profit group who work in partnership with families, schools, service providers and state bodies. AsFan provide information, advice, advocacy, support and skills training for families, professionals and healthcare professionals who live with or work with individuals on the autism spectrum.

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