FACTS AND QUESTIONS

 

Q: Who will carry on the circle of care?

All across the country, hundreds of families care for relatives with a mental illness or other lifelong disabilities. Every day, they do things together as families: go to work, prepare meals, go shopping, plan a birthday, and plan for retirement. But every day, the primary Caregivers-parents, a sibling, an aunt or uncle-may wonder: What will happen to my loved one when I can no longer give them a family life and all the security it provides?
Today, many of these families have connected with a PLAN program. PLAN-or Planned Lifetime Assistance Network-was founded to assist families in planning for the future of relatives with a mental illness or other lifelong disabilities. PLAN brings into focus the issues that are important now and that will remain important over an individual's lifetime: housing, meaningful work, financial resources, social activities, proper nutrition, enjoyable pastimes, and reliable health care. By helping families develop a Plan for the future, PLAN enables families to carryon the circle of care, so that the quality of life their loved ones enjoy now continues into the future.

Q: Who benefits from future-care planning?

Future-care planning is good public policy for those who need the care and those who give the care. Working collaboratively with the public sector and other private sector organizations, the National PLAN Alliance is committed to establishing a nationwide network of PLAN programs which abide by certain standards.
- PLAN programs have not-for-profit status.
- Family members and consumers who represent the population served constitute a significant percentage of members of the board of any PLAN program.
- At the very least, PLAN programs provide a minimum of three key services including (1) the development of a plan of care, (2) Identification of finances to support the plan of care, and (3) Identification of a person or person’s to carry out the plan of care.
- The PLAN program is structured to respond to the needs of families and their relatives with all disabilities.
- A paid professional administers a PLAN program.
- A PLAN program has liability insurance for members of the board of directors and employees who do not have their own professional liability insurance.

Q: How did the PLAN concept begin?

Since PLAN programs were started by families and are primarily for the families of loved ones with disabilities, the National PLAN Alliance and its member programs are dedicated to providing education, assistance, and support. When families ask: "Who will take my place when I am no longer able or available to provide care?" PLAN has a response.
Local PLAN programs continue the kind of Support the family is now providing. They help families plan for the lifelong care of the family member. They advocate for the family and their loved one with a disability. And they do all this by specific actions:
- PLAN programs help families devise a plan of care that will maintain the quality of life for the relative with a disability.
- They help families identify people who will be constant advocates, monitoring services and care.
- PLAN helps families create the necessary legal documents and identify the financial and other resources to support the plan of care.
- PLAN identifies a person or persons to implement the plan of care.

Q: Where does the future-care planning process start?

By attending PLAN seminars, parents and other family caregivers learn the process through which a future-care plan is developed and put into practice.
The National PLAN Alliance and its member programs hold regular seminars where families and others learn the basics of future-care planning. While these seminars do not replace professional legal and financial advice, they help families begin to plan and meet with these professionals.
PLAN helps families deal with many tough questions and difficult decisions. During the course of a seminar, participants begin a planning workbook which makes their journey a little easier. It organizes topics, presents important information, and helps families prepare documents that focus their future-care planning efforts.
The result is an ongoing record completed by the entire family, including the family member with a disability. Families update the workbook periodically as their situation changes, and they make their wishes known to significant others who may be involved in the future care of the loved one with a disability.

Q: Why is future-care planning so critical today?

Still, some people ask, why is future-care planning important? Isn't it just a personal family issue?
Yes and no. When a family devises a lifetime care plan for a loved one with a disability, the plan is extremely personal. It is based on the families and the individual's-preferences. It includes details about their interests, values, beliefs, work styles, their need for interaction, and special physical and medical needs. The plan incorporates their goals for the future and helps them achieve these objectives by ensuring access to financial, legal, and social resources. So a future-care plan is personal to the family and the loved one with the disability.
But it is also a public service. Our society has changed and individuals cannot rely on the public sector to continue the quality of life and support families now provide for loved ones with disabilities. A few statistics reveal why:
- The capacity of government and the public sector to provide housing is limited and will never meet the demand.
- 65% of adults with a mental illness currently live with their families.
- Of the adult population with developmental disabilities, 80% currently live with their families.
The parents of these individuals are 50 to 80 years old. Their children are 25 to 55 years old. Together they have benefited from a number of societal, medical, and educational changes that have taken place during the last 30 years including expanded community services, the demise of institutional care, assisted living technology, longer, healthier lives, psychotropic medication, rehabilitation, and educational opportunities.
These positive changes in quality of life now require that families face a new dilemma-who will take their place when they can no longer provide and coordinate care?
Together, the National PLAN Alliance, its member PLAN programs, families, and involved private and public sectors are developing a way to secure the future for the less able members of our society. Thus, in this way, we shall all carry on the circle of care.