For Parents, or Current Advocates:
Every parent of a child with special needs has particular concerns over what happens to their
child as he or she ages, and especially who will take over the parents’ role when the time
comes that the parent is no longer here, or no longer able to do all the things that the parent
has done before. No one knows your Person better than you, and no one else can take over
without your careful planning for that transition. This workbook can help you organize your
thoughts, plans, suggestions, resources, and goals for your Person. You will have an
opportunity in the pages ahead to relay information about your Person that will be helpful in
the future. It can serve as a roadmap so that whoever follows you in your role as Advocate
can do so with your careful consideration and guidance that will continue when you cannot
serve in the same capacity as you’ve done in the past.
For New Guardians, Conservators, Trustees, and Advocates:
You have been chosen to take on the primary responsibility for an individual with a
disability. It might mean a sudden introduction to mental illness, physical disabilities, or
developmental disabilities. You may or may not have been fully exposed yet to the dynamics
of that Person’s disabilities and abilities, but the hopes are that you can assume that
responsibility with clear guidance and planning from the parent or previous Advocate for
that individual. The transition to this role can be challenging, but with the careful planning
provided by the parent or previous Advocate, and the guidance provided by this workbook,
you can do it! Keep in mind that there are resources available to help you with this process,
most of which may be outlined in the pages ahead.
Introduction:
Assuming responsibility for an adult with special needs can be a formidable decision. As the
Advocate for a person with developmental disabilities, mental illness, or physical disabilities,
you have the responsibility for the health, care, and well-being for that person, much like a
parent does for their child. It is different though, than parenting a child. Being responsible
for another adult means taking on this challenge with a commitment to a person who is not
able to care for themselves due to their disabilities. Whether you are the current primary
provider for the Person or are taking on this new responsibility as a family member,
provider, or friend, it is important to recognize that you will be the most important advocate
for that person.
It is not always easy; in fact, it can often be challenging to balance what you must do as an
Advocate with careful consideration of the desires and beliefs of the individual with special
needs. Your Person will likely have their own ideas of how things should be done; balancing
those ideas with choices that you must make can be difficult, but recognizing the importance
of including that person’s desires is critically important.
If you are the parent or current Advocate for your Person, you hold a tremendous amount
of knowledge in your head regarding their daily life, social services, living skills, medical
conditions, specific disability-related issues, financial information, and resources, to name
but a few. Your challenge is how to transfer that knowledge to the person you will designate
as the new Advocate once you are unable to fulfill that role.
If you are the new Advocate, you will likely have a steep learning curve in taking on this new
responsibility.
This workbook is designed to help both the current and new Advocate prepare for the
transition time, as well as providing an ongoing resource for the future.
Whether you are becoming a guardian, conservator, trustee, or simply taking on the role as a
primary advocate, this workbook will provide suggestions and guidance on how to navigate
existing systems. While it may seem overwhelming at first, this workbook will help guide
you through the process of knowing as much as you can about the individual, existing
support systems, and the social service agencies you may be dealing with. It is not
designed to replace an attorney, social worker, case manager, or others that should
be on your team.
This workbook is not designed to be read from front to back, rather it is a resource that will
guide you through many aspects of being an advocate. Included is a table of contents to
help you easily find the section you need. However, it is highly recommended that the new
Advocate immediately refer to the Getting Started section, as there is critical information
included in that section which you must be aware of from day one.
Before you move further into this workbook, remember you are not alone and you aren’t
expected to know everything immediately. Use your resources and do ask others for help.
Those resources may include an attorney, social worker, case manager, personal agent,
provider(s), family members, friends, etc. You don’t have to do this alone.