5038.01
10/2003
A Self-Advocacy Manual
For People Who Get Services from Regional Centers
Capitol People First and Protection & Advocacy,
Inc.
Peer Advocacy Project 1994
Revised 1998, 2003
The Law – The Lanterman Act
In California, people with developmental disabilities have the right to help and services. The law says that people who use Regional Center services have the right to decide what kind of support they want and need. They also have the right to make choices about their lives.
The law says that people have the right to make choices about:
Where to live… Where to work… Who to live with… Who to have for friends… What to do for fun… What to do in your future.
The law says that you have a right to:
Your own written Individual Program Plan that lists your goals and the services you need. This is sometimes also called a Person Centered Plan. This manual will use the term Individual Program Plan (IPP) because that is the phrase the law uses.
The law says you should receive services and support in places that are as normal as possible – NOT in institutions or places only for people with disabilities. Services and supports should really help you become a part of your community.
The law says that:
Your own written IPP must list your goals and the services you need to live more independently in the community.
You have the right to be a big part of making your IPP.
The Regional Center and other agencies that provide services to you, like group homes or workshops, must help you make your own decisions about services.
The important information you need to know to make decisions must be given to you in a way you can understand. The more information you get, the more power you have.
What is your IPP?
It is your own action plan about the help you need to live like you want.
It is a written agreement or contract between you and your Regional Center Service Coordinator (Case Manager or Social Worker).
It is made by you and your Regional Center Service Coordinator and other people you invite to your meeting. The Regional Center may also ask people who they think will be helpful to come to your meeting.
It lists the services that you want and need to become more independent and to live the way you like.
Why is your IPP important?
Your IPP is important because it tells about what services and help the Regional Center will get for you.
Your Regional Center must provide you with the services listed in your IPP. That is the law…the Lanterman Act.
If something is written in your IPP, the Regional Center must give it to you. You are entitled to it. Usually the Regional Center must buy services for you from another agency.
If something is not written in your IPP, you cannot count on getting it.
Your Regional Center cannot change what is in your IPP without having a meeting with you. That is in the law, too.
Why is your IPP meeting important?
It is important because it is the only time and place where your IPP can be officially talked about and written up.
You have the right to be at your IPP meeting and tell people what kind of help and services you need the Regional Center to get for you.
The Regional Center cannot write an IPP about you without you being at the meeting.
The Regional Center must have a person at your IPP meeting who can say “yes” or “no” to your request for services. This may be your Service Coordinator or another person from your Regional Center. This means that Regional Centers cannot make decisions outside your IPP meeting about the services you need.
If the person who can agree to your request for services is not at your IPP meeting, the Regional Center must set up another meeting within 15 days and make sure this decision-maker is present.
You and the Regional Center must agree on and sign the IPP before the services can be given. If you only agree to part of your IPP, ask your Service Coordinator to make a written statement that says:
“I agree to these parts of my IPP (list them), but not to these parts (list them). Please start or continue the services I agree to right away.”
If the Regional Center says “no” to any of your requests, the Regional Center must send you a letter within 5 days telling you why they are not giving you the service you want and telling you how to file an appeal (see What are some of the services you can have in your IPP).
The law says that most people must have an IPP meeting at least once in 3 years. For some people, because of their living arrangements, they must have an IPP meeting every year. Check with your Service Coordinator if you have questions about this. If you want to have one sooner to talk about changes in your life, you can ask your Services Coordinator to set one up. The meeting must be held within 30 days of your request.
You can ask to have a different Service Coordinator and you can ask to change programs you are in.
What should you do to get ready for your IPP meeting?
Be positive! You are good at lots of things and have good ideas about what you want for your life.
Before the meeting, take time to think about the dreams or goals you have for your future and the help you need to reach your goals.
Before you go to your meeting, talk to people you trust about what you want to say at your meeting. Practice being clear about what you want.
There is a special IPP Meeting Planner at the end of this manual to help you plan for your IPP meeting.
Write down what you want to say about your dreams and the services you want. If you need help writing it down, ask a friend to help you.
If you have trouble writing or get nervous or forget things, you can also make a tape recording of the services you want. Bring the tape to play at your IPP meeting.
You can ask the Regional Center to help you to find out more about what you do well and the things you still need help with. Some people call this an “assessment.”
What should you do at your IPP Meeting?
You can invite anyone to your IPP meeting. It’s your meeting so, if you want friends, family, or an advocate to support you, ask them to come.
It is important that you speak up ask for the services you want – but don’t get mad. It is always better to try to work together. It is your IPP meeting and you have a right to ask for the services you think you need. Nobody else can do that as well as you can.
At the IPP meeting, give your Service Coordinator the written list (or the tape) of your dreams and services you want from the Regional Center. What you have written will help your Service Coordinator write your IPP.
What are some of the services you can have in your IPP?
At the end of this booklet, there is a list of services you may request in your IPP. It is taken from the Lanterman Act, but the law does not limit you to this list. You may ask for other services that help you be more independent or productive.
Help to get a job, including Supported Employment services.
Help to get into school or a training program.
Transportation and training to learn how to use buses and other transportation services.
Instruction and support so that you can live in your own place.
Training on how to advocate for yourself better.
Help to get involved in fun things happening in the community.
Someone to assist you if you want to be on a committee or a member of a Board of Directors and need help.
Help to get adaptive equipment like wheelchairs or computers that speak.
Other services you need to live a better life.
What to do if the Regional Center says “No” or makes a change in your services that you don’t like?
If you are unhappy about a decision the Regional Center has made about services you want, you have a right to appeal the Regional Center’s decision.
You should get people to help you with all the steps involved with an appeal. It’s not easy, but it is your right to try to change the Regional Center’s decision. It is the law.
Step 1: Within 5 days of making their decision, the Regional Center must send you a letter about anything it is changing in your IPP or any new request denied to you and tell you why.
If you do not understand the letter, get a friend or advocate to help you.
Step 2: The Regional Center is supposed to give you information that explains how to appeal. If they don’t, ask them about it. Then you have to send a letter to the Regional Center saying you want to appeal. If you need help, get a friend or advocate to help you.
Step 3: You have up to 30 days to file an appeal (send in your letter) after you get the Regional Center letter about changing your services. If you do this within 10 days of getting the letter, the Regional Center cannot stop your services while the appeal is going on. That is the law.
Step 4: After you file your appeal, a meeting will be scheduled so you can tell the Regional Center again what you want and why you don’t like what they decided.
You do not have to go to this meeting. It is your choice. If you do not want to go to this meeting, you can go on to the next step of the appeal process. If you do go to this meeting and the Regional Center still doesn’t agree with you, you can still go on to the next step.
Step 5: The next possible step in the appeal process is mediation. Mediation is when someone who does not work for the Regional Center meets with both you and the Regional Center. This person tries to help you all agree on the services you will get. If you both reach an agreement, you are done. If you do not agree, you can go on to a Fair Hearing. You or the Regional Center can also skip the mediation step and go on to a Fair Hearing.
Step 6: At a Fair Hearing, you will have a chance to put your case before a Hearing Officer, like a judge, from the state. The Hearing Officer will write a decision about your case.
Sometimes California Department of Health Services will look at the decision and may change it. If this happens, you must get the final answer within 10 days of the hearing.
Step 7: If you don’t like the Fair Hearing decision, you can appeal it to court. You should have a lawyer do that for you. You have only 90 days to file an appeal in court from the day you get the Fair Hearing decision. You need to find a lawyer who will help you as soon as possible. Protection & Advocacy, Inc. (PAI) can help some, but not all, of the people who call them. You can call PAI at (800) 776-5746.
Remember, all of this is complicated and everyone should get help with an appeal. Talk to your Area Board, PAI, or People First group in your area for help.
Your rights if you live in a facility or care home.
You have these rights. Staff must let you make decisions in your day-to-day life, like….
When you go to bed… When you eat… Whether you want to have friends over, and… What you do in your free time.
You also have a right to:
Wear your own clothes… Have your own things and use them… Keep and spend a reasonable amount of your own money… See visitors each day... Have a place to keep your own things… Talk on the phone… And send & receive unopened mail and have letter-writing materials, including stamps.
Rights can be taken away only if you would hurt yourself, another person, or the home. Rights cannot be taken away to punish you.
If a right has been denied, this must be reviewed every 30 days.
You can appeal the fact that a right has been taken away.
You can start by calling the Regional Center’s Client Rights Advocate. (1-800-390-7032)
You can also call your Area Board, People First group, or Protection & Advocacy, Inc. (1-800-776-5746).
A poster about your rights written in clear language should be in every facility and care home. Your rights should also be available on tape and in Braille, if needed.
This worksheet helps you plan for the services you want from the Regional Center. Use it to help you think about what you need to do things more independently.
My own place
A group home
My own place with roommates
A large care facility
My parent’s place
Other__________________________________________________________________________
_______________________________________________________________________________
_______________________________________________________________________________
What services do you need to help you live where you want?
More trainingIn the community without extra help
In the community with an aid or job coach
In a workshop or center
I go to school
I don’t work or go to school
Other__________________________________________________________________________
_______________________________________________________________________________
_______________________________________________________________________________
In the community
In a workshop or center
I want to go to school
I don’t want to work
What kind of work do you want to do?
_______________________________________________________________________________
_______________________________________________________________________________
_______________________________________________________________________________
Other__________________________________________________________________________
_______________________________________________________________________________
_______________________________________________________________________________
A job coach or aide at the job
Training in a workshop
Other training
More education
Access to work place – ramps, etc.
Transportation
Other__________________________________________________________________________
_______________________________________________________________________________
_______________________________________________________________________________
Visit friends
Read
Shop
Take classes
Go to movies or plays
Volunteer work
Play sports
Listen to music
Hobby
Dating
Watch TV
Other__________________________________________________________________________
_______________________________________________________________________________
_______________________________________________________________________________
Training
Attendant
Facilitator
Transportation
Set up a circle of friends
Job Coach
Other__________________________________________________________________________
_______________________________________________________________________________
_______________________________________________________________________________
Cooking for myself
Shopping for things I need
Personal Care (For example: IHSS)
Cleaning my place
Managing my money
Getting medical care
Meeting more people/making friends
Riding the bus or other transportation
Learning about personal relationships
Learning about sexual relationships and safe sex
Getting along better with people
Self advocacy and knowing my legal rights
Problems with Social Security, SSI, or other assistance
programs
Learning about self-defense
Other__________________________________________________________________________
_______________________________________________________________________________
_______________________________________________________________________________
Training (What type?_________________________________________________________)
An attendant
An assistant to help with chores
Just someone to ask questions to
Help setting up a circle of friends
An advocate or lawyer
A service coordinator to help me plan for and get services I
need
Other___________________________________________________