INCLUDES FORMS FOR Living Will and Medical Health Care Surrogate SPECIAL ACKNOWLEDGEMENT T he Florida Developmental Disabilities Council dedicates this handbook to the memory of Janice Tully. Janice worked for many years on grants from the Council to the Department of Children and Families, Developmental Disabilities Program. She had a natural ability to organize many people and much information and could make it look so easy. Her work is reflected in this document, and although she left us before it was finished, we think she would approve. All of us who knew and worked with Janice miss her unique talents and tender ways. It seems fitting to dedicate, to her memory, information to help organize your life to ensure your loved one’s needs are addressed, as she was the most dependable, caring and organized individual most of us ever encoun- tered. We miss her deeply. Acknowledgements W e would like to thank those who provided expertise, technical assistance and review in the development of the original Planning Ahead reference material and in the review and development of this third edition. A special thanks is given to Margaret Hargrove for her editing and nurturing this project to completion for a third time. Her expertise and commitment to providing individuals and families with the most current information and best practices is deeply appreciated. Appreciation is especially extended to the original Planning Ahead Advisory Team for their advice, support and encouragement as well as to the Advisory Team that has assisted in the rewrite of this third edition. Janie Whitfield Sharon Boone Deborah Linton Bob Foley Susan DeBeaugrine Dolores Norley Jadene Ransdell Gail Rapp Marianne Ferlazzo Thanks is also extended to Melinda Coulter, staff member of the Agency for Persons with Dis- abilities, for her review and insight into guardianship best practices and in bringing her own experiences as a legal guardian. To the Developmental Disabilities Council, Community Living/Service Coordination Task Force and Latarsha Williams, Task Force Program Manager thank you for your ongoing support. This project would not have been possible without the participation of the staff from the following agencies: Agency for Health Care Administration/Division of Medicaid Agency for Persons with Disabilities Department of Children and Families Adult Services Economic Self-Sufficiency Family Safety and Preservation Mental Health Substance Abuse Department of Education/Vocational Rehabilitation Department of Elder Affairs Department of Health Florida Protection and Advocacy Center Long Term Care Ombudsman Council Tallahassee Office of the Social Security Administration A very special thanks is extended to the individuals, family members, advocates, support coordinators, and providers of services who gave us your time in reviewing the handbook. Your suggestions truly helped us in providing needed improvements so all users can be more fully empowered when navigating the vast array of systems and practices they face. T C ABLE OF ONTENTS PAGE SECTION 1 The Handbook........................................................................................................1 Chapter 1 Getting Started.........................................................................................................3 Chapter 2 Preparing Yourself & Others.................................................................................7 Chapter 3 Using Government Benefits..............................................................................10 Chapter 4 Understanding Florida’s Social Service System For Individuals With Developmental Disabilities......................................17 Chapter 5 Advocating & Coordinating Care....................................................................22 Chapter 6 Choosing The Best Place To Live......................................................................27 Chapter 7 Life Stages: Early Intervention, School, Work & Retirement...............................................................................................31 Chapter 8 Legal Ways Of Protecting Rights.....................................................................35 Chapter 9 Making An Estate Plan........................................................................................43 Chapter 10 Dealing With Health Care Concerns...............................................................48 Chapter 11 Coping With Changes & Losses.......................................................................50 SECTION 2 The Personal Information Summary.........................................................55 SECTION 3 Helpful Attachments.........................................................................................81 SECTION 1 THE HANDBOOK Developmental Disabilities Council, Inc. Sponsored by The United States Department of Health and Human Services., Administration on Developmental Disabilities and the Florida Developmental Disabilities Council, Inc. 1 C O HAPTER NE Getting Started W hen children are very young it is simple to leave instructions for the babysitter to follow. For parents of a child with a disability, it is natural to continue this as the child grows. However, as this child reaches adulthood, while leaving instructions may continue, it is often dif- ficult to plan ahead to a time when we will not be available to leave the list of “do’s and don’ts” or “likes and dislikes.” We even find it difficult to plan ahead for the time when we will no longer be here – who will inherit what, where we want to be buried, etc. This planning ahead is even more critical when there is a child with a disability in the family who will grow up continuing to possibly need supervision and support in a few or many areas of their life. It becomes very important to commit to writing what we would like the future to be, to leave a verbal picture for new supports and caregivers. Planning ahead today is quite different from anything that could have been imagined twenty years ago. We would never have believed that so many persons with disabilities could be mak- ing many of their own choices, living in the community, owning their own homes, holding regular jobs, establishing and working toward their own goals. As you study the handbook and complete the Personal Information Summary with your family member, keep these thoughts in mind so that whatever plan you believe is best now won’t prevent that person from moving forward far beyond present expectations. Words you will be hearing often, and four primary principles to remember are: Inclusion – People with disabilities are no longer separated from those who are not disabled. They participate and interact with others in the community just as you and I do. Inclusion also includes addressing cultural diversity. Self Determination – People with disabilities take control of their own lives, make choices and exercise their rights. Person-centered Approaches & Planning – The focus of planning is done by and with the individual. The planning process must be geared to the individual’s particular desires and per- sonal wishes. Planning is on-going and responds to the needs of the individual and respects their personal choices. Person Centered Planning is not a quick solution or just a written docu- ment to address problems – it is a consistent and on-going approach to support the individual 3 Chapter 1, Getting Started in realizing goals and outcomes he has set for himself and responds as goals and outcomes change. A few areas to think about when planning with the individual: • Honoring the individual’s voice and vision of what he wants his life and future to look like and supporting him to realize his vision • Respecting diverse ways of communication; • Insuring that a variety of natural and community supports are present to provide a solid foundation for the individual including spiritual, civic and other community alliances, and that family, friends and other connections are nurtured; • Providing meaningful and stimulating opportunities through work, where one lives and leisure opportunities; • Providing information and resources including educating the individual about options and opportunities so he can choose and experience a wide variety of what life has to offer; • Respecting the individual’s right as a citizen and as a human to enjoy a fulfilling, safe and healthy life; • Providing supports and security in the form of financial, health, freedom from abuse, neglect and exploitation and in making plans for their future. If guardianship is present in the individual’s life, insure that the guardianship is a support to the individual in realizing his preferences and choices. In addition, guardianship at any level should be frequently reviewed to determine if it is still needed and, if not, to ensure action is taken to restore rights as needs and situations change. Personal Outcomes – Services and supports provided should be based on the personal out- comes desired by each individual to improve that individual’s quality of life. A listing of “My Personal Outcomes” can be found in the Helpful Attachments section of this handbook and additional information is located at www.thecouncil.org. T P O S D HE RINCIPLES F ELF ETERMINATION The Principles of Self Determination and movement are founded on four basic American prin- ciples: Freedom – the exercise of the same rights as all citizens. People with disabilities, with assis- tance when necessary, will establish where they want to live, with whom they want to live and how their time will be occupied. They do not have to trade their inalienable rights guaranteed under the Constitution for supports or services. Authority – the control over whatever sums of money are needed for one’s own support, in- cluding the re-prioritizing of these dollars when necessary. This is accomplished through the development of an individual budget that “moves” with the person. Support – the organization of these resources as determined by the person with a disability. This means that individuals do not receive “supervision” and “staffing”. Rather, individuals with disabilities may seek companionship for support and contract for any number of discrete tasks for which they need assistance. 4 Chapter 1, Getting Started