A GOOD LIFE: for you and your relative with a disability by Al Etmanski. Burnaby, BC: Planned Lifetime Advocacy Network, 2000. 328 pages. ISBN 0-9680462-1-5. $45.95 including postage and handling.
Order from PLAN 260-3665 Kingsway, Vancouver BC, V5R 5W2 at phone 604-439-9566. The book may also be available from an organization in your region that is affiliated with PLAN.
Reviewed by Lucie Milne for OAARSN.
Those who raise a child with a disability understand the choices and decisions they must continue to make on the child’s behalf–medically, educationally, financially, and for general care. They usually look to government funding and programs and to social services, in order to fulfil their child’s life and needs. Yet, how often strategies, programs and services change so that families must scramble for new answers, new opportunities for help. Sometimes families may not be given decision-making for their child by government or full access to the child if he or she is in an institution. No one is able to look after a child with the same love, persistence, interest and determination as a parent. But parents are not around forever and all children grow to adulthood. For those with a relative who is disabled, the nagging questions grow. What is the future for this loved one? When I am gone how will they become an acceptable member and contributor to their community?
Families who want a good life, an alternative life for their child – in which disabled persons can define and identify themselves in families and communities, where they can live a life that does not depend on social services and government funding programs–can turn to a unique support network called Planned Lifetime Advocacy Network. PLAN exists to assist families create a safe and secure future for their relatives with a disability. It offers “families everything they need to know about planning for the future, including what they might be afraid to ask.” PLAN will be “there to fight and advocate for their sons and daughters long after [parents] are gone.”
Among precedents for support networks, the PLAN model is distinctive for the large share of costs born by families and for avoiding any government funding, in order that families and friends can be free to speak up. With PLAN, families pay for facilitating and maintaining the networks. Foundations and corporations are asked for funds for some administrative overheads and to support subsidized networks for folks that may not have families or funds.
A GOOD LIFE describes what PLAN is. In Seven Steps (chapters) the author uses the stories of people with disabilities to illustrate the good life these individuals have created. Worksheets with simple guidelines and questions are provided to record important factors in understanding the person with a disability, portraits of health, education, work and recreation. Guidelines and questions help evaluate residential services, choices of relationships to be made, medical and financial decision-making. Worksheets on wills and estate plans are included.
The purpose of this encouraging, user-friendly book is to inform all concerned with individuals with disabilities of a new way of thinking, a different approach or perspective about what is important. It is a book about discovering the good life for each individual, and about insight into the true meaning of life.
- PLAN creates an approach that goes beyond formal social services and relegates them to the background.
- PLAN challenges and creates a safe and secure future for a disabled person after parents die.
- PLAN uses a team that places friends, neighbours and family at the heart of a solution.
- The challenge of PLAN is to create and expect the kind of life every person is entitled to and with this to guide families through their process of creating this life. In and for this process they are connected with other families.
A brief outline of each of the Seven Steps shows how the book may be used–as a whole or in portions.
Step One – SHARING YOUR VISION has worksheets that address parents’ visions of their relative’s life after they have died: priorities for future caregivers; urgent concerns; message left for loved one; and important arrangements to ensure quality of life. Included are The Present Family Portrait, A Letter to the Future and the parent Contract where the parent creates a plan for the safety, security and well-being of their relative who is disabled.
Step Two – BUILDING RELATIONSHIPS is a practical discussion of building a network of support for one’s relative, and the relationships that must made for the individual with a disability and among friends and supporters.
Step Three – CREATING A HOME is for the stability and security that are fundamental to a good life for an individual within a community. This embodies what is important and meaningful for the person with a disability. Home ownership also reflects choice and control.
Step Four – MAKING A CONTRIBUTION recognizes, validates, develops and ensures the natural gifts of those with disabilities. This does not always include financial remuneration. Work and hobbies express who one is. Every individual’s contribution is important to the community.
Step Five – ENSURING CHOICES answers the question of how to respect the choices and preferences of disabled persons, while at the same time keeping them safe. It answers how to champion the individual’s autonomy and self-determination, nurture their abilities and dreams and to declare their worthiness.
Step Six – DEVELOPING YOUR WILL AND ESTATE PLAN is self-explanatory.
Step Seven – SECURING YOUR PLAN “looks at the worst that can happen in order to prepare for the best” and a parent’s fears that, however well they have planned, “things may spin out of control when I’m not here.” That’s where PLAN, composed of families working together, makes a lifetime commitment to maintain the personal future plan of each individual with a disability when parents become infirm or die.
A GOOD LIFE is uniquely useful. It is also delightfully readable. It sparkles with quotations from the great, the good and the witty. And its good advice is illustrated in scores of vignettes of individuals and families who have proved the value of PLAN’s approach.
Is this book only for those with disabilities and their care-giving family members, each who seek the good life? No! The book is for everyone who wishes to understand the meaning of a contributing community, that its members include those with disabilities. For those who are not disabled or with responsibility for someone with a disability, reading this book can encourage one to move beyond the self-centred lifestyles and selective relationships and friendships that are pervasive in our society. As a Christian minister I see in PLAN the kind of networking community that the early Christian Church created and which today our faith communities often fail to practice.
A GOOD LIFE offers a PLAN of great hope for all of us!