Chapter 5: Advocating for Yourself

(5.1) What is advocacy?

People with developmental disabilities have personal and civil rights. These include the right to receive services you are eligible for and the right to receive them in the most integrated setting. Advocacy means speaking up and fighting for these rights.

The regional center – and all public agencies – must respect your rights. They must follow the law and certain rules. Many rules talk about how to get the services you need and choose.

If your regional center does not give you the services or supports you are entitled to receive, you can fight (appeal) their decision.

Important! There is a deadline to appeal. If you miss the deadline, you may not be able to appeal. See Chapter 10 for information on appeals.

If you are appealing a decision from another agency, ask what their deadline is for filing an appeal.

(5.2) Who can be an advocate?

Anyone can be an advocate. You can be an advocate for yourself. You can be an advocate for someone else. Or, you can have someone else be your advocate.

Be sure that you and your advocate agree on what you want. Put it in writing. Say you want the person to be your advocate. Also write down your goal, like getting a new service or keeping the services you already have.

(5.3) Do I need a lawyer?

Not always. Sometimes, you do not need a lawyer to win. But, if your case is complicated, an advocate can help you. The advocate does not have to be a lawyer, even for a fair hearing. To file a lawsuit in court, you may need a lawyer. Sometimes you may file a lawsuit on your own. If you file a lawsuit on your own, called in pro per, you may be able to get help from a legal aid program.

(5.4) Who can give me help with advocacy?

Here is a list of places that can help you:[[Regional center must give you a notice when it proposes to reduce, change, or terminate a service that you are already receiving, or denies a new service you are asking for. The notice must include advocacy services you may need to appeal the regional center’s decision. See Section 4701(g).]]

• Call OCRA at 1-800-390-7032 in Northern California or 1-866-833-6712 in Southern California. They can give you a list of Clients’ Rights Advocates who help people near each of the 21 regional centers. 
• Call the State Council on Developmental Disabilities (SCDD). It has regional offices that used to be called Area Boards. Go to https://scdd.ca.gov/ or call them at (916) 263-7919.
• Join a self-advocacy group, like People First, to meet other people with developmental disabilities. Call your local Disability Rights California, OCRA, or regional office of the SCDD for the phone number of the People First group near you.
• Call your local family resource center. Find one near you by clicking here.
• If you live in Porterville Developmental Center or Canyon Springs, call your Clients’ Rights Advocate and the Volunteer Advocacy Services Coordinator.
• If you are having problems with vocational services through the Department of Rehabilitation, call DRC’s Client Assistance Program at 800-776-5746 or TTY at 800-719-5798 or go to DRC’s website by clicking here.
• For free or low-cost legal help, contact the legal aid office in your area. Go to: http://laacdirectory.org/.
• If you are having problems with a licensed professional, contact the California Department of Consumer Affairs at: 800-952-5210 or TDD 800-326-2297.
• Call your local county bar association for lawyer referrals in your area.
• Contact one of these non-profit agencies for legal help:

Disability Rights Education & Defense Fund
3075 Adeline Street, Suite 210, Berkeley, CA 94703
Voice: 510-644-2555, TTY 510-841-8645
www.dredf.org

Mental Health Advocacy Services
3255 Wilshire Blvd., Suite 902, Los Angeles, CA 90010
Voice: 213-389-2077; Email: info@mhas-la.org
www.mhas-la.org

Deaf Counseling, Advocacy and Referral Agency (DCARA) (Northern California ONLY)
510-343-6670; Email: info@dcara.org
www.dcara.org

Disability Rights Advocates
2001 Center Street, Fourth Floor, Berkeley, CA 94704-1204
Voice: 510-665-8644; Email: info@dralegal.org
www.dralegal.org

Mental Health Advocacy Project
Law Foundation of Silicon Valley
4 Forth Second Street, Suite 1300, San Jose, CA 95113
Voice: 408-293-4790
www.lawfoundation.org/mhap

Disability Rights Legal Center
Voice: 213-736-1031
TTY: 213-736-8310
Email: DRLC@drlcenter.org
https://thedrlc.org/

(5.5) How does Disability Rights California (DRC) protect my rights?

DRC’s job is to protect and advocate for the rights of people with disabilities.[[Section 4902.]] DRC can also give you referrals and information about other advocacy resources. To know how DRC can help you, call 800-776-5746. 

Here are ways Disability Rights California provides advocacy:

Disability Rights California’s Regional Legal Offices – DRC has six offices (Sacramento, Oakland, Fresno, Los Angeles, Ontario, and San Diego) that offer many types of help. You can go to one of their training sessions, get information booklets, or call to get answers over the phone. Sometimes, a lawyer or advocate can represent you in court or at an administrative hearing. Call 800-776-5746.

Office of Clients’ Rights Advocates (OCRA) – DRC has a contract with the Department of Developmental Disabilities (DDS) to provide clients’ rights advocacy for regional center clients. OCRA has Clients’ Rights Advocates (called a “CRA”) for people who get services from every regional center. Your CRA can help you. They can give you information, training, and answer questions over the phone. Sometimes, OCRA’s lawyers or advocates can represent you in court or at an administrative hearing. In Northern California, call 800-390-7032; in Southern California call 866-833-6712. TTY 877-669-6023.

Disability Rights California’s Peer Self-Advocacy Unit – The Peer Self-Advocacy Unit offers support and help to people who advocate for their own rights. They share experiences and support one another. The people who work in this unit have disabilities themselves. This unit can help you learn about your rights, how disability service systems work, and how to advocate for yourself. Call 800-776-5746.

Disability Rights California’s Investigations Unit (IU) – DRC’s IU looks into reports of:

• abuse and neglect in state hospitals and other facilities
• abusive or negligent care
• sexual assault
• physical abuse or neglect
• improper use of seclusion and restraint.

They also find and document serious, systematic abuse and neglect. For more information about IU, call 800-776-5746.

(5.6) What is the State Council on Developmental Disabilities?

The State Council on Developmental Disabilities (SCDD) is an independent state agency. It makes sure that people with developmental disabilities get the services and supports they need.

There are 31 voting members of the SCDD appointed by the governor. 20 of the members must be nonagency members who reflect the socioeconomic, geographic, disability, racial, ethnic, and language diversity of California. 

• 7 of these 20 must be persons with developmental disabilities
• 7 must be parents, relatives, guardians, or conservators of persons with developmental disabilities
• 1 must be a person with a developmental disability who is a current or former resident of an institution, or her/her immediate relative, guardian, or conservator.[[Section 4521.]]

Agency members of the SCDD include people who work for disability-related private or public agencies, such as DRC, DDS, the Department of Education, and the Department of Rehabilitation. To advocate for the rights of people with developmental disabilities, ask to be appointed to the SCDD.

SCDD creates and monitors the state plan for services for regional center clients. The purpose of the state plan is to make sure there is a good system of community services. They make sure the system is directed by and centered on consumers and families. And it should make sure people with developmental disabilities to have self-determination, independence, productivity, and integration into all areas of community life.[[Section 4562(c).]] The state plan finds areas that need improvement and services that need to be increased for people with developmental disabilities and their families.

Every 5 years, the SCDD prepares a “needs assessment.” This is available to the public and updated every year. The SCDD asks all regional centers about the services and supports they are missing and what new, expanded, or converted services and supports they need. The SCDD shows new and different ways to deliver services to meet the needs of regional center clients. The SCDD can use information from other sources, including public hearings.[[Sections 4520, 4521, 4540, 4561, 4675, 4676 and 4677.]]

The SCDD talks with DDS to recommend to the Department of Finance funding for developing new programs in the Governor’s budget based on the needs assessment.[[Section 4677(b)(6).]] Contact:

State Council on Developmental Disabilities
3831 North Freeway Blvd., No. 125
Sacramento, CA 95834
Toll Free (833) 818-9886 or (916) 263-7919
Email: council@scdd.ca.gov
www.scdd.ca.gov

(5.7) How does the SCDD operate in California?

The SCDD has 12 regional offices.[[Section 4544(a).]] These offices were called Area Boards before, so some people still call them that. People who work in the regional offices give trainings and hold events. They can also help people who call and have questions. They have groups of self-advocates.

“Regional Advisory Committees” advise the regional offices. These regional advisory committees are the boards of directors of the regional offices.[[Section 4544(b).]] They

• advise the SCDD on the local issues and needs,
• give information to the SCDD on making the state plan for developmental disabilities, and
• give information for persons with developmental disabilities, their families, professional groups, and the general public to increase awareness of the state plan.[[Section 4548.]]

Go to https://scdd.ca.gov/contactus/ and click on “regional offices” to find your area’s office (formerly called Area Boards).

(5.8) Who are the Clients’ Rights Advocates and Volunteer Advocacy Service Coordinators in facilities?

DDS contracts with the SCDD to provide Clients’ Rights Advocacy services to people in Porterville Developmental Center and Canyon Springs.[[Section 4433.5.]] There is a Clients’ Rights Advocate (CRA) who can tell you your legal rights. This means your right to evaluations and an IPP that lists the services and supports you need to leave the facility and live in the community. The CRA will advocate for you while you are in the facility.

Porterville and Canyon Springs also have a Volunteer Advocacy Service Program. If you want someone to help or represent you at an IPP meeting when a community placement is being considered, the SCDD can appoint a Volunteer Advocate to help you.[[Section 4541(a)(3).]]

(5.9) What is the Client Assistance Program (CAP)?

CAP can help you understand your rights and responsibilities related to services from the Department of Rehabilitation (DOR). CAP advocates can help you understand if you qualify for DOR employment services and how to develop a plan for employment (which can include a plan for self-employment). CAP advocates can give you information about what services DOR provides and about what services are available from the Independent Living Centers. CAP advocates can help you get the services that are right for you under federal rehabilitation laws.[[Title 29 United States Code Section 732.]]

To contact the Client Assistance Program, call: 800-776-5746, 800-719-5798 (TTY) at Disability Rights California.

(5.10) What is “People First” and how do I join?

People First of California is a self-advocacy organization made up of people with developmental disabilities. There is a statewide People First organization and a local chapter in most areas. People First helps people with disabilities

• speak for themselves,
• learn about their rights and responsibilities, and
• solve their own problems.

People First groups are leaders in advocating for the rights of regional center clients. They also provide information and materials to help you make your own life choices. They hold events throughout the state. To find your local People First, contact:

People First of California, Inc.
P.O. Box 2223
Elk Grove, CA 95759
(916) 552-6625
Go to https://www.peoplefirstca.org/contact-us to send an email. You can also call Disability Rights California’s Peer Self-Advocacy program at (213) 213-8134. 

(5.11) Can the regional center help me be my own advocate?

Yes. Your regional center may offer self-advocacy training, facilitation, and peer advocates.[[Section 4512(b).]] They may offer transportation to meetings, pay for conferences held by self-advocacy groups, or hire the facilitator you choose for your IPP meetings. If you get supported living, you can get advocacy, self-advocacy training, and facilitation services.[[Section 4689(c).]]

Regional centers can also help you get involved in activities like serving on a board of directors. They can help you with training, transportation, and facilitation. If you want these services and supports, they must be in your IPP.

(5.12) How can the Family Resource Centers help me?

If you have a child with or at risk of having a developmental disability, you can get parent-to-parent support from a Family Resource Center. They offer support services and resources, parent groups, information, and referrals.

You can find the phone number for your local Family Resource Center at: https://www.ceitan-earlystart.org/central-directory/

(5.13) If I don’t have someone to help me advocate for myself, can I get a representative?

A regional office of the State Council on Developmental Disabilities may advocate for you or help you to advocate for yourself. SCDD may appoint a representative to help you or advocate for you.

(5.14) What should I know to be a good advocate?

Collect the facts. Think about what you would want to know about the situation if you were hearing about it for the first time. Look at all documents about the situation in your file at the agency or regional center. You can review your own file at any agency and make copies. By law, it cannot cost over 10 cents per page to copy your papers unless a different law sets a different amount.[[California Civil Code section 1798.33.]] You do not have to pay for the time it takes to make the copies. Keep a copy in your own personal file of each paper the regional center (or any other agency) has in their file for you.

Keep a diary. If you have a meeting or phone call, write down everything people said. Write down who was at the meeting and who said what. It will help remind you later of what happened. Keep all the papers about the situation together in your file.

If you don’t understand, ask questions. You have the right to get information from every agency in a way you can understand and in a language you understand. If you don’t understand what someone tells you, ask them to explain. Ask as many questions as you need to understand.

Be a good listener. After you ask for a service or ask a question, listen to their response and write what they say. Ask yourself if the response answers the question you asked. If it doesn’t, ask a follow-up question. Don’t move on to discuss something new until you understand what they said about the request or situation you just discussed.

Make sure you and the regional center are talking about the same things. If you have to argue with the regional center about something important to you, first make sure everyone understands each other and agrees on the basic facts. Each side can have their own opinion on the facts, but neither side should have their own facts. Give them information that only you know, or that is in your assessment reports. Give them information reported by someone who knows you well or by one of your service providers. Once you and the regional center agree on the basic facts of your request or your situation, you can talk about services or other solutions. 

Sometimes you cannot agree with the regional center about the facts of or your needs. If that happens, you may have to go to a hearing and have an administrative law judge decide the facts. Hearings like these are to find out what the facts are and then apply the law and decide.

Be prepared. Before you go to a meeting, look over your file. Know what you want, and why you want it. Make a list of questions you want answered. Bring all your information about what you need and want and why. Find out before the meeting what the regional center might say or what information in your records the regional center may point to about the issues. Draw a line down the middle of a piece of paper and list the facts and evidence you have on one side of the page. Write the facts or evidence the regional center or other agency has on the other side. This shows where you may need more evidence. Maybe you need a new evaluation report or information from one of your providers to address what the regional center might say.

Share information. Your opinions are valuable. You know your needs as well as the professionals who evaluated you. Don't be afraid to say what you think.

Be assertive. You have a right to receive services. The agency is there to help you get services. You don’t need to be angry, but you do need to speak up for yourself.

Get help when you need it. If you don’t feel comfortable going to a meeting alone, get someone to go with you. Take a friend, relative, or someone from an advocacy organization. You may always take someone with you. They can help you stay focused and take notes at the meeting. Just having someone there for oral emotional support can help.

See other DRC publications about self-advocacy skills and strategies by clicking here.

(5.15) How can I become a better negotiator?

Negotiation is two sides working to agree to something both sides like. Usually, you must talk, make offers, and be flexible when you negotiate. Meetings you have with the regional center or other agencies involve some negotiation. IPP meetings and less formal meetings can be a negotiation.

But, sometimes there are disagreements that cannot be solved with negotiation. If that happens to you, you can have a formal hearing or use the agency’s complaint process.

Follow these steps to help you prepare for a negotiation:

Step 1: Write one paragraph about the problem. Your paragraph should:

• Describe the problem
• Say what causes the problem
• Say what changes you need to resolve the problem

Keep in your own mind what you will accept as a solution. What you will accept is your bottom line – the point you will not go below. Don’t say your bottom line before the negotiation starts. Save that for when the negotiation process gets stuck, and it does not look like the regional center will make the changes you want. If the regional center will not provide your bottom-line solution, you may have to appeal the regional center’s decision to a fair hearing.

Important! Do not give your notes to the regional center or agency. These are your notes to help you negotiate.

Step 2: Figure out who you need to negotiate with. Look for someone with authority who is closest to the problem. For example, if the problem is a disagreement with your service coordinator about the need for a service, you could negotiate with them. If regional center denies a service because of its policy, you need to negotiate with someone with more authority, like a manager. You cannot negotiate with someone who does not have the power to say “yes.” Demand to speak with someone with authority to give you the services you need. The Lanterman Act gives you the right to meet and negotiate with people from the regional center who are authorized to resolve your situation.[[Section 4646(d) and (f).]]

Step 3: Look at strengths and weaknesses of your position and of the regional center’s or other agency’s case. To figure out if you are in a strong position, think about:

• What the law says about the service or other situation you are negotiating with the regional center about.
• What are all the facts that everyone agrees on?
• For the facts you and the regional center do not agree on, can you prove what you think is true?
• Are there other situations where the regional center provided similar services to what you are asking for to resolve a similar problem?

You can make your case stronger by:

• Getting an evaluation of you and your situation by a professional;
• Asking other regional center clients and family members who know about your situation to support you in your request;
• Talking to local or state elected officials about your situation or contacting the media about your case, if the regional center is not acting reasonably.

Step 4: Make two lists: One list has the reasons the regional center (or another agency) told you about why they disagree with you. The other has reasons they may have for disagreeing with you, but have not said or written down. Here are reasons the regional center or other agency may disagree with you:

• They do not agree you need the service.
• They do not believe you are entitled to the service under the law.
• They do not understand what you need.
• They do not believe they can go against an existing policy for buying the service.
• They believe the service you are requesting might harm you.

The regional center may have reasons for not agreeing with that they do not say or write down anywhere. These are:

• They fear liability. This means they are afraid something bad will happen to you and you will sue them.
• They are afraid to set a precedent. The regional center is afraid that if they give you this service, everyone else will want it too.
• They do not take your request seriously.
• They are set in their ways and always use the same procedures and provide the same services in the same amount. They do not want to change the way they have always done things for everyone they serve.
• They think it costs too much money.

Step 5: Make a plan and stick to it! Write a plan that says how you will get the regional center to agree to what you want. Focus on the reasons the regional center has for not agreeing with you. This includes reasons they have not talked about, but you think may be why the regional center has denied your request. If you can give them what they want or are worried about, and still get what you want, you have a good chance of success.

To make your plan:

• Research the facts.
• Figure out your bottom line.
• Figure out the compromises you are not willing to make (non-negotiable points).
• Figure out the compromises you are willing to make, but keep these to yourself for as long as you can.
• Set up a date, time, and place for the negotiation.
• Write an outline and rules for the negotiation.
• Set a deadline for coming to an agreement. If you can’t agree by the deadline, you may have to go to a hearing.

You can ask someone to help you in the negotiation, or you can bring an expert who supports your position. You can ask someone with more authority from the regional center to come to the negotiation if you are afraid the right people will not attend.

Supplement M has a worksheet that can help you prepare your negotiation.

(5.16) What is evidence?

Evidence is anything that can prove something is true. Evidence is important even if you do not go to a fair hearing. If you show evidence that supports you, it will help persuade the regional center your request should be granted without needing a hearing. However, if you have to go to a hearing because you cannot resolve your dispute any other way, the rules about evidence are more relaxed in these fair hearings than they are in court.

Evidence includes:

• What you say or another person says in a hearing, and
• What your records and reports say about you and what you need.

For example, to prove you need more Independent Living Skills training hours, give the hearing judge all the evaluation reports or other information to show your needs. Reports and testimony by witnesses are examples of evidence. The regional center will offer evidence like this. The regional center will have their staff come to the hearing to tell the judge why they don’t need to give you the service or more hours. Because of this, you need to bring written evidence or someone to testify why you need it.

You have the right, before the hearing, to see the evidence the regional center will offer at the hearing, and the regional center has the same right to see your evidence. The law says at least five days before the hearing, you and the regional center exchange copies of the documents you each plan to offer at the hearing. You also have to exchange a list of the potential witnesses you each may ask to testify and a little bit about what they will say.[[Section 4712(d).]] Some evidence is more important than other evidence. For example, if a psychologist comes to the hearing and testifies instead of just giving a copy of their report, it is considered more valuable than just the report on its own. 

(5.17) How can I find out what the regional center’s or other agency’s position is in my case?

Regional center must give you an “adequate notice” 30 days before it reduces, terminates, or changes your IPP services without you agreeing.[[Section 4710(a).]] Also, whenever a regional center denies you a service or support you asked for in your IPP, it must send you an adequate notice.[[Section 4710(b).]] An adequate notice must include:

• the decision the regional center made,
• the basics facts the regional center is basing their decision on,
• the reason or reasons for the regional center’s decision,
• when the decision will go into effect,
• the law or policy supporting the decision,
• how to appeal, and
• what advocacy resources there are to help you with your appeal.[[Section 4701(a)-(e) & (g).]] 

This notice should tell you the regional center’s position in your case. If the notice is missing something or you do not understand, contact the regional center and ask for the information.

Other programs, such as IHSS and Medi-Cal, must give you Notice of Action letters when they make a decision, too. These notices are like the adequate notice regional centers must give you. If you are advocating for yourself or someone else in one of those programs, and it does not issue a Notice of Action letter, contact the program and ask for that letter.

(5.18) How can I change the regional center system so it works better for everyone with developmental disabilities?

People with developmental disabilities, their friends, and families should work on the “system” so state agencies and regional centers do their jobs well.

There are many ways to do this, including:

• Offer your opinion at the regional center’s public meetings, especially when they are making their plan for the next year.
• Offer your opinion when the State Council on Developmental Disabilities or your regional office of the SCDD collects information about needed services and supports.
• Testify at legislative hearings about the budget for the developmental disabilities service system and about services and supports for people with developmental disabilities in California.
• Join People First or another self-advocacy group.
• Join advocacy organizations like: The Arc of California or United Cerebral Palsy or Fiesta Educativa.
• Join local task forces or advisory groups working on an issue you are interested in.
• Join a state “stakeholder” group, task force, or advisory committee formed for a specific project to advocate, advise, or investigate.
• Get on the board of directors of a regional center or regional office of the SCDD or another agency.
• Write letters to your newspaper or call your radio station if you do not agree with their coverage of disability issues.

(5.19) What is a “stakeholder organization,” and how can I join one?

A “stakeholder organization” is a state organization that represents the interests of “consumers, family members, service providers, and statewide advocacy organizations.”[[Section 4512(k).]] DDS or legislative committees often ask stakeholder organizations to give their opinions on important system policy issues.

Some stakeholders are self-advocacy organizations, like People First of California, Disability Rights California, and service provider organizations. You can join a group that represents your views and try to make a difference.

(5.20) What is a task force or advisory group, and how can I join one?

DDS, state legislators, regional offices of the SCDD, and regional centers use task forces or advisory groups to study issues, recommend policies, evaluate new services, and investigate system problems. These agencies must make their best efforts to include consumers and family members. Task forces or advisory groups must also reflect their community’s diverse cultures.[[Section 4640.8.]]

If you learn about one of these groups and you want to participate, let them know. These groups are formed when an issue or question comes up and a regional center needs community input and advice. If you contact your regional center ahead of time, you have a better chance of participating.

(5.21) How can I make sure my regional center has the services and supports that people want?

Keep up to date on changes and trends in the service needs and system for people with developmental disabilities. For example:

• The Autism rate in California is rising. Autism requires special services and supports, like smaller settings or settings with little stimulus. The state may need to dedicate more resources to services to address these increased needs. You may need to advocate to encourage the Legislature to respond.
• People with some disabilities or combinations of disabilities find it hard to get services. For example, people with developmental and psychiatric disabilities or people with chronic medical problems who need special technology. Advocates can improve systems and services here.
• Many consumers want to live, work, and play in integrated settings. Many people want to work at regular jobs with supports instead of working in sheltered workshops. Others want to go to the local “Y” in the summer instead of a camp for people with disabilities. Advocates can help steer service delivery systems toward more integrated service models and outcomes.
• New and better ways to serve people are being developed around the country the world. If you learn about these, you can help make sure services in your area keep up with progress being made in other places.

The regional center works to develop new types of services and make their services available to more people.[[Section 4648(e).]] The regional center should collect information about the services and supports that are missing in their area. Ask your regional center if it is doing this. And ask for a copy of their list of needed services that are not available.

Your service coordinator should help you think about the supports you need, even if they are not available yet. The regional center’s development unit can add this information to their list of missing services. This will help them see the “big picture,” especially if many people with developmental disabilities are asking to develop similar new services. It will help the regional center decide the best way to focus their resources and develop new services.

The Department of Developmental Services (DDS) negotiates five-year contracts with each regional center. DDS includes in each contract annual performance goals for each regional center. These goals must be developed through a public process that asks for information from the regional center’s community through focus groups and surveys.[[Section 4629(c)(1)(B).]] These public hearings, focus groups, and surveys are a chance for people with developmental disabilities and their families to talk about new policies and programs needed in each regional center’s area.

Beginning on May 1 of every year, regional centers must hold at least one meeting on how the regional center did with last year’s goals. These meetings must be publicized in advance to get community input.[[Section 4629(f).]] These meetings are a good chance to find out how regional centers are doing and how they can improve in areas where they have come up short.

When it develops its annual “Community Placement Plan,” the regional center uses its experience with people at risk of being placed in developmental centers to find services and supports that will help prevent this. The regional center receives funding specifically to develop these services and supports.[[Section 4418.25(c).]] The process of developing this plan is another chance to provide input and advocating for community-based services. These services would help people avoid going into facilities.

Every five years, the State Council on Developmental Disabilities (SCDD) asks all regional centers about the services and supports they are missing. SCDD asks what new, expanded, or changed services and supports they need. They must highlight new and different ways to deliver services to meet the needs of regional center clients. The SCDD can also use information from other sources, including public hearings. You can join these hearings and point the regional center toward the goals you think it should focus on.[[Section 4677(b).]]

The law says these goals must focus on helping people with developmental disabilities to achieve life quality outcomes. They must show good progress, better than how things are for people right now. They must involve the development of services needed to meet identified needs, including cultural- and language-appropriate services. They must reduce differences in how services are bought and make this equal among regional center consumers. They must make progress in the employment of people with developmental disabilities. These goals must be specific and measurable.[[Section 4629.]]

You can find out how your regional center is doing in meeting these goals. Regional centers must post their annual performance contract objectives and their year-end performance on their websites.[[Section 4629.5(b)(9).]]

Because the law requires regional centers to focus on these goals, you may also want to focus on these in your advocacy. This is especially important if the regional center is failing to meet its required goals. 

(5.22) How can I make sure the system considers the opinions of people of different ethnicities?

The system needs input from different groups to meet the needs of all of its members. The law says a regional center must do all it can to make sure that its task forces and advisory groups have consumers and family members from the community’s multicultural diversity.[[Section 4640.8.]] If you are a member of one of these communities, you are an asset to the regional center when it forms these groups. This law may help you join one of them if you want to serve.

(5.23) Can I advocate for myself and others through one of the regional offices of the State Council on Developmental Disabilities?

The State Council on Developmental Disabilities (SCDD) has 12 regional offices covering different areas of the state. These offices provide services to people with developmental disabilities and their families. They provide:

• advocacy assistance,
• training,
• monitoring of regional centers and disability service systems, and
• public information.

Regional offices must make sure people with developmental disabilities, their families, and the public is involved in each of the 12 areas. Regional advisory committees advise the regional offices about this.[[Section 4544.]] If you want to serve on the advisory committee to your regional office, call that office and tell them. 

(5.24) How can I get on the regional center’s board of directors?

At least half of each regional center’s board members must be people with developmental disabilities, their parents, or legal guardians. At least 25 % of the members must have developmental disabilities. Members must represent the different disabilities served by the regional center.[[Section 4622.]] If you want to be a board member, tell your service coordinator or other regional center staff you are interested.

(5.25) Can I get a facilitator through the regional center to help me advocate for myself or participate on boards or at meetings?

Yes. The regional center can pay for self-advocacy training, facilitation, and “peer advocates” if they are included in your IPP.[[Section 4512(b).]] Facilitation means giving you materials or equipment, or helping you make and express your choices and decisions.[[Section 4512(g).]] If a friend or relative cannot help you, the regional center can pay for a facilitator.[[Section 4512(b). ]] If your IPP includes support from a facilitator, you can choose the facilitator.[[Section 4648(a)(12).]]

(5.26) What are local and state advisory committees?

Local advisory committees advise the regional center’s board of directors.[[Section 4622(h)&(i).]] The people on the committees have developmental disabilities.

The state also has its own consumer advisory committee that gives DDS information about issues that affect consumers in California. If you want to participate, go to www.dds.ca.gov/consumers/consumer-advisory-committee/ for more information.

(5.27) How can I get on Disability Rights California’s board of directors?

Disability Rights California is a non-profit agency that gives legal help and other advocacy help to people with disabilities. There are 13-17 people on Disability Rights California’s board of directors. The people on the board of directors reflect the diversity of the people that Disability Rights California serves.

If you want to apply for a position on Disability Rights California’s board of directors, you can fill out an application. If there is an opening on the board, it is posted at https://www.disabilityrightsca.org/about-us/board-of-directors/join-our-board. For more information, call Disability Rights California at 1-800-776-5746 or OCRA at 1-800-390-7032.