Chapter 8: How to Stay Out of an Institution

(8.1) Do I have to live in an institution?

No. The Lanterman Act gives you the right to get the services and supports you need to stay in your community. You also have the right to get these services and supports “in the least restrictive environment” (LRE).[[Sections 4501 and 4502(b)(1).]]

According to the California Supreme Court, the purposes of the Lanterman Act are to:

• Keep people with developmental disabilities out of institutions as much as possible, and avoid separating them from their families and community,
• Allow people with disabilities to live like people their age without disabilities, and
• Help people with disabilities live more independently and productively in their community.[[Assoc. for Retarded Citizens-Calif. v. Dept. of Developmental Services, 38 Cal.3d 384, 388 (1985).]]

The U.S. Supreme Court also talks about the right of persons with disabilities to receive services and supports in the least restrictive environment. The Court found it is an illegal form of disability discrimination to make a person with a disability live in an institution if they do not need to.[[Olmstead v. L.C. (1999) 527 U.S. 581.]] The Americans with Disabilities Act contains an “integration mandate.”[[Title 28 Code of Federal Regulations section 35.130(d).]] Under the “integration mandate,” a public agency must carry out its services, programs, and activities in the most integrated setting for the needs of people with disabilities. In the Olmstead v. L.C. case, the most integrated setting for the people involved was a community-based program and not an institution. There, the public agency responsible for services was required to consider such a program instead of an institutional setting.

(8.2) Can I get services to help me be part of the community?

Yes. Everyone has the right to live in and get services in the least restrictive, most integrated setting, based on their needs and choices.[[Sections 4688 and 4688.21.]] Community integration services can help you be involved in your community and live somewhere other than in an institution.[[Section 4688.05.]]

You can get community integration services no matter where you live. For example, if you live in a group home with other people, community integration services might help you to move into a more integrated setting. This could be supported living[[Section 4689.]], a family teaching home[[Section 4689.1.]], or living with your family.

“Behavioral services may help you live in the community. Some people call behavioral services, “ABA.” ABA is Applied Behavioral Analysis. These services may help you learn ways to live better in your current placement. They can help you get along better with others. They can help you learn new behaviors to live in a different place. If you are interested in behavior services, talk to your regional center service coordinator. Also, see Disability Rights California’s publication called, “Access to ABA Therapy” found here: https://www.disabilityrightsca.org/publications/access-to-aba-therapy

(8.3) How can I move out of an institution and into the community?

You must change your IPP. The IPP process determines the services and supports you need and allows you to identify those you want. It is also a way to make sure you can be integrated into your community. (See Chapter 4 on the IPP process, and Chapter 7 on living arrangements.)

If you live in a developmental center or other institution, you should have an assessment and an IPP based on your needs and wants. Look at what is keeping you from living in the community, and what you need to live in the community. Sometimes, housing, services, and supports are not available. But if the services and supports you need to live in the community are listed in your IPP, your team must find or develop those for you.

(8.4) What is a developmental center?

A developmental center (DC) is a state institution for people with developmental disabilities. It is a very restrictive and segregated place to live. There is only one developmental center - Porterville - still operating in California. There is also one state operated facility, similar to a DC, called Canyon Springs. Although some Porterville DC and Canyon Springs residents have severe disabilities, many people in DCs could live in the community if they had the right services and supports. California law changed to close DCs and help people move into the community with services and supports. A growing number of states have done the same and closed large state institutions. 

(8.5) What are Acute Crisis Units?

Acute Crisis Units are state-run facilities that provide short-term residential treatment to people with developmental disabilities in crisis. They are also called STAR facilities. STAR stands for Stabilization Training Assistance Reintegration. Only 5 people can live at each home. These homes are at Porterville DC, Canyon Springs, and other locations, but have different services and follow different rules. Some people confuse these Units with DCs. But, they are short-term placements and are meant for you to return to the community as soon as possible.

There are several Acute Crisis Units serving northern, southern, and central California. Some serve children, while others only serve adults.

You can live in an Acute Crisis Unit for up to 13 months. But, your IPP team must start planning for your discharge back into the community as soon as you arrive.

(8.6) Can my regional center place me in an Acute Crisis Unit?

Yes, if there are no community placements, services, and supports that can meet your crisis needs. The regional center must refer you for a 4418.7 assessment before you can be admitted into an Acute Crisis Unit. See Question 13 for information on the 4418.7 assessment.

(8.7) What are Institutions for Mental Disease (IMDs)?

IMDs are facilities with 16 or more beds where people get diagnosis, treatment, and care (including medical and nursing care) for a mental health disability.[[42 CFR Section 435.1010]] In California, IMDs can be psychiatric hospitals, psychiatric health facilities (PHF), skilled nursing facilities with special treatment programs (SNF-STP), mental health rehabilitation centers (MHRC), or state hospitals.

For people with developmental disabilities, IMDs are very restrictive settings. 

(8.8) Can my regional center place me in an IMD?

Yes, but the Lanterman Act says regional centers can only do so if you are in an acute crisis, and under certain conditions. The DDS Website explains IMDs are highly restrictive facilities that do not typically provide appropriate services for people with developmental disabilities and co-occurring psychiatric disabilities. For this reason, current law places severe restrictions and time limitations on the use of IMD residential services by regional centers for people with developmental disabilities.[[Section 4648(a)(9)(C)]]

(8.9) What are the restrictions and time limitations for an IMD?

Before placing you in an IMD, the regional center must complete an assessment. The assessment must explain all community supports the regional center considered, including:[[Section 4648(a)(9)(C)(iii)(I)]]

• Rate adjustments,
• Supplemental services,
• Emergency and crisis intervention services,
• Community crisis home (CCH), and
• An explanation of why those services could not meet your needs

Before placing you in an IMD, the regional center director must confirm there are no community-based options that can meet your needs.[[Section 4648(a)(9)(C)(iii)(II)]]

Once you are admitted to an IMD, the regional center should try to move you back to the community within 72 hours.[[Section 4648(a)(9)(C)(v)(I)]] If you cannot move back into the community within 72 hours, the regional center must:

• Complete paperwork to support a petition for commitment under Welfare and Institutions Code section 6500.[[Section 4648(a)(9)(C)(v)(I)(ia)]]
• Complete a comprehensive assessment that identifies services and supports you need for crisis stabilization and the timeline for developing services and supports for you to move back into the community.[[Section 4648(a)(9)(C)(v)(I)(ib)]] Regional center must submit this to the court immediately. 
• Hold an IPP meeting within 30 days of admission to determine services and supports you need for crisis stabilization and to develop a plan to transition you into the community.[[Section 4648(a)(9)(C)(v)(I)(ib) ]]

If you cannot move into the community within 90 days of admission, the regional center must hold an IPP meeting to discuss transition to the community and whether you still need crisis stabilization.[[Section 4648(a)(9)(C)(v)(II)]]

You cannot stay in an IMD for more than 6 months unless, before the 6^th month:[[Section 4648(a)(9)(C)(v)(III)]]

• The regional center has conducted another comprehensive assessment based on current information that shows you are still in an acute crisis, and[[Section 4648(a)(9)(C)(v)(III)(ia)]]
• The IPP team has developed a plan that identifies the specific services and supports you need to transition into the community, and the plan includes a timeline to get or develop those services and supports, and[[Section 4648(a)(9)(C)(v)(III)(ib)]]
• The committing court has reviewed and extended the commitment.[[Section 4648(a)(9)(C)(v)(III)(ic)]]

You cannot stay in an IMD for longer than one year unless:

• The regional center shows significant progress toward the plan to transition you into the community and
• Extraordinary circumstances exist beyond the regional center’s control that have prevented them from getting those services and supports within the timeline in the plan.[[Section 4648(a)(9)(C)(v)(IV)(ia)]]

If both of those apply, the regional center can ask the committing court for an extension past one year, not to exceed 30 more days.[[Section 4648(a)(9)(C)(v)(IV)(ib)]]

(8.10) Are there other requirements if the regional center puts me in an IMD?

Yes. IMD staff must help you transition back to where you lived before, or another place in the community, within the timeframes.[[Section 4648(a)(9)(C)(v)(V)]] DDS must monitor IMD placements and transitions back to the community.[[Section 4648(a)(9)(C)(vi)]] The regional center must tell your local Clients’ Rights Advocate (CRA) when you are admitted to an IMD, and give the CRA a copy of your comprehensive assessment and the date for your IPP meeting with 7 days’ notice.[[Section 4648(a)(9)(C)(vii)]] The CRA is a staff person from Disability Rights California. If someone other than the regional center puts you in an IMD, the IMD must tell the regional center within 5 days. The regional center must do a comprehensive assessment of you within 30 days.[[Section 4648(a)(9)(C)(viii)]]

Your transition to the community should be based on your IPP goals and individual needs. You should move into the least restrictive environment that preserves your rights and choices.[[Section 4648(a)(9)(D)]] When you are in an IMD, you have all of your rights under the Lanterman Act, which must be posted in the IMD with simple language and pictures.[[Section 4648(a)(9)(E)]]

Because an IMD is a very restrictive setting, please call Disability Rights California for help to stay out or get out of an IMD.

(8.11) What is deflection?

Deflection is the process of identifying and setting up services and supports you need to stay out of an institution. There are special laws about deflection so people with developmental disabilities are not placed in a developmental center.[[Sections 4418.7(a)-(c) and 4418.25(c).]] Deflection services can keep you out of an institution by:

• Helping you stay in your current placement. For example, you could get mental health services and behavior intervention services to keep you in your living arrangement if you are going through a crisis.
• Helping you find a different placement if you cannot stay in your current placement.
• For children, the regional center may have to try new and creative ways to meet your family’s needs and keep the family together.[[Section 4685(c)(2).]]

Deflection sometimes means you need more services. These are called supplemental services. For example, your IPP team may agree that you need more support staff.[[Section 4648(a)(9)(C).]] You can get crisis intervention services in your community. If there is no way for you to stay in the community, the regional center must try to get you back to the living arrangement you choose, with all the supports you need, as soon as possible.[[Section 4648(a)(10).]]

(8.12) How do I know what deflection services are available?

Ask your regional center service coordinator. Regional centers should refer you for an assessment if your community placement is at risk of failing. This is called a 4418.7 assessment. The Regional Resource Development Project (RRDP) will complete this assessment of you. It will show what community placements, services, and supports you need to help you stay in the community. See question 14 for more details about the RRDP.

Another resource is Mobile Crisis Services. Regional centers must have Mobile Crisis Services available to consumers. Mobile Crisis Services can stabilize and support you in your current living arrangement, day program, or school. See the DDS website for more information on Mobile Crisis Services.

There are also state-operated crisis services available around the state, called Crisis Assessment Stabilization Teams (CAST). Your regional center may refer you to CAST for help, if they have used all the crisis resources in your area already. CAST can help if you are at risk of having to move from the community to a more restrictive setting.

You may get Institutions for Mental Disease Intensive Transition Services (IITS). IITS are for people with developmental disabilities and co-occurring psychiatric disabilities at risk of admission to an IMD or are transitioning from an IMD, or are transitioning from an IMD step-down home to the community.

Institutions for Mental Disease Step-Down Homes are for people coming out of IMDs or at risk of going into an IMD. The homes provide intensive supports and services that are person-centered, structured, and focus on skill development.

Every regional center is supposed to have an agreement with county mental health agencies. These agreements are called memoranda of understanding (MOUs, for short). They include crisis intervention plans for people who are regional center and county mental health consumers (or could be eligible).

The crisis intervention plan may include:

• response systems for after-hours emergencies,
• guidelines for notifying other agencies, and
• follow-up protocols.[[Section 4696.1(b)(2).]]

You may also need emergency housing options, such as:

• crisis group homes,
• crisis beds in a regular group home,
• crisis foster homes, and
• motel, hotel, or psychiatric facility beds.[[Section 4696.1(f).]]

To learn more about the services available at your regional center, you can ask your regional center for a copy of their MOU or get a copy from DDS.[[ection 4696.1(e).]] DDS has information on each regional center’s emergency housing options, including whether they serve children or adults and whether they are physically accessible to people with physical disabilities.[[Section 4696.1(f). ]] DDS also has information on each regional center’s crisis services.

(8.13) What happens if I am having problems living in the community?

You may need a different living situation in the community. If you need help to find or create a better living situation so you can stay out of an institution, your local RRDP (regional resource development project) may help you. If you are at risk of being placed in a DC or Acute Crisis Unit, your regional center must notify the RRDP.[[Section 4418.7(a)(1).]]

RRDPs are agencies that work with regional centers to help you by consulting with planning teams and finding the services and supports necessary for you to succeed in community living.[[Section 4418.3(b).]] The RRDP looks at your situation, visits you (if appropriate), and figures out what is keeping you from integrating into the community. Then, they recommend the supports that would help you stay in your community. You should have an IPP meeting with a RRDP staff who can figure out how to meet your needs in crisis situations and in general.[[Section 4418.7(a) & (b).]]

Important! If someone threatens to send you to a restrictive setting, call the RRDP and ask for an assessment. Go to the DDS website here https://www.dds.ca.gov/services/state-facilities/regional-resource-development-projects/ for a list of RRDPs.

(8.14) What is the Community Placement Plan (CPP)?

The Community Placement Plan (CPP) includes a lot of information on efforts by regional centers and the state to serve people in the community. The CPP includes information about:

• The number of people who went into a DC and the reasons.
• The number of people who received RRDP evaluations and the outcomes of those and whether community services and supports succeeded in helping people remain in the community, and the unmet needs of people who went into a DC.
• Progress made in developing statewide specialty services, including community crisis options.[[Section 4418.25.]]

Every year, the regional centers get additional funding to do assessments, plan programs, and provide resources, services, and supports to help people live in the community.[[Sections 4418.25 and 4679.]] Regional centers decide how many people to include in the CPP each year. To learn about how well your regional center performs under the CPP, contact DDS.[[Section 4418.25(c)&(d).]]

(8.15) Can I move out of a developmental center if I am not in the CPP?

Yes. You still have rights under the Lanterman Act, including the right to assessments, person-centered planning, and to live in the least restrictive, most integrated setting.

If you are not on the CPP list, your regional center will not get additional funding to help you move to a community setting. But, you have the right to get the services and supports listed in your IPP that would allow you to live in the most integrated setting possible. You can also get the services you need to move out of a DC or to keep from being placed in a DC. Sometimes, you may have to go to court to enforce your right to not live in a DC.

(8.16) Am I ready to move out of a developmental center?

This is a trick question. It does not matter if you are ready or whether the services you need are currently available. What matters is that you have the right to get the services and supports you need and want, and to live in an integrated community setting as much as possible.

If you live in Porterville DC or Canyon Springs, your IPP team should not ask if you are ready. They should ask:

• What services and supports will meet your needs and wants in a community setting and allow you to participate in community activities?
• What is keeping you from living in the community now?
• What steps should we take to allow you to live in the community?
• What services and supports should we find or develop so you can live in the community safely and appropriately?

(8.17) What if I cannot express what I want?

If you cannot use words to say what you want, your IPP team can look at your actions and what you like and dislike. If your disability is so severe that your IPP team cannot figure out what you want, they can assume that:

• You would make the same choices as most people.
• You do not want to live in an institution if there is a safe alternative.
• You want and deserve to be included and integrated into the community, not isolated and segregated.
• You want to be free, not confined.[[The fundamental values underlying such laws as the Lanterman Act and the Americans with Disabilities Act require the presumption that even those who cannot express their preferences would prefer and deserve to live in the least restrictive environment.]]

(8.18) What are the different commitment orders?

The most common commitment orders are:

• Welfare & Institutions Code, section 6500: This is used to commit people with intellectual disabilities who are found to be dangerous to themselves or others. The court must decide what is the least restrictive environment for the person to live.[[Welfare and Institutions Code section 6509.]] The court must review the commitment every year.
• Penal Code, section 1370.1: This is used for people who are “incompetent to stand trial” (IST) on criminal charges because of a developmental disability.[[For a more detailed description, see Disability Rights California’s publication Forensic Mental Health Legal Issues, found here: https://www.disabilityrightsca.org/publications/forensic-mental-health-legal-issues]] It is also called a forensic commitment. The commitment is for no more than 2 years.
• Penal Code, section 1026: This is for people declared “not guilty by reason of insanity” (NGI). It lasts until “sanity has been restored” or until their sentence ends.

We do not cover the complicated procedures for commitment orders here.[[See the DDS publication Admission and Community Re-entry Processes at State Residential Facilities: A Guide to Statutory Requirements, Judicial Findings (Case Law) and Administrative Procedures in California. Find it online at: www.dds.ca.gov/wp-content/uploads/2019/03/CC_CommReEntry_20190318-1.pdf.]] You should work with your attorney, often a public defender, who is assigned to protect your rights.

(8.19) What is diversion?

If you have a developmental disability and are charged with a criminal offense, the court may let you get treatment and habilitation instead of going to jail.[[Penal Code section 1001.20 and following.]] This is called diversion.

Your diversion program can last up to 2 years. If you finish the program as instructed, the court dismisses the charges against you. If not, the court may reinstate the charges.

You are eligible for diversion if:

• Your crime is a misdemeanor or felony, but not a serious felony.
• You have not been in a diversion program in the last two years.
• You have a developmental disability
• You are a regional center client and eligible for services.[[Penal Code section 1001.21.]]

(8.20) What diversion services can I get?

Diversion services include:

• Diagnosis, evaluation, and treatment.
• Personal care, day care, in-home care, and special living arrangements.
• Physical, occupational, and speech therapy.
• Training, education, and sheltered employment.
• Mental health services, recreation, and counseling for you and your family.

Other services like protective services, social and legal services, information and referral services, follow-along services, and transportation.[[Penal Code section 1001.20(b)]]

(8.21) Can I ask the court to review my placement if I live in a DC?

Yes. If you think your placement in the DC is illegal or inappropriate, ask the DC or regional center staff to release you. Or have someone else ask for you. Then you are entitled to a court hearing by writ of habeas corpus.[[Welfare and Institutions Code sections 4800-4801.]]

The DC or regional center staff person who you tell you want to be released must fill out a Request for Release form. (The Clients’ Rights Advocate at the DC can help you with this process.) The DC must send the form to the court and a copy to your parent or conservator with a letter saying that the court was notified. If the DC intentionally does not follow these requirements, it is a misdemeanor.[[Welfare and Institutions Code section 4800(c).]]

The court can make an order saying the DC must release you. Or there may be a hearing. You have a right to have a lawyer at the hearing. If you cannot afford a lawyer, the court will appoint a lawyer for you.

If the court says that you do not have a developmental disability, or that you can safely meet your own needs, the DC has 72 hours to release you. If you cannot meet your own needs, but you have a responsible person or agency that can and will, you may be released subject to any conditions the court finds proper and consistent with the Lanterman Act.[[Welfare and Institutions Code section 4801(c)(2).]] For example, the court can order the DC to release you and order the regional center to give you the services and supports you need. If the services are not available, the court can order the regional center to find or develop the services and to report to the court on its progress.

(8.22) What can my IPP team do if the court sends me to a DC?

The only developmental center still open is Porterville Developmental Center (PDC). It is possible the court may find you need services only offered at PDC. PDC could also be a less restrictive setting than jail or prison. But, the regional center should still be involved, even if the court wants you to go to PDC. Your IPP team should consider why the court made this decision and start helping you address the issues that influenced the court so you can move out as soon as possible. Your IPP team can talk to your lawyer or the court about what placement and services they can give you.

The court relies heavily on reports from your DC and the regional center to determine if you need to stay in the DC. Your IPP also gives the court valuable information about the supports you need, what is keeping you from living in the community, and what you need to return to the community. Often the problem is simply that the housing or supplemental services and supports you need to live safely in the community are not available. Once the court knows what you need, it can decide if you need to live in a DC, or how to meet your needs in the least restrictive setting.

Your lawyer or advocate can ask for an order that does not specify how much time you have to be in the DC. Instead, they can ask for an order that says you can leave the DC when the services you need to return to the community are available. Your lawyer can also ask the court to monitor the progress of the regional center in finding or developing the services and supports you need.

(8.23) Can someone in the DC help me?

Yes. The State Council on Developmental Disabilities provides clients’ rights advocacy services to people in Porterville Developmental Center and Canyon Springs.[[Section 4433.5.]]

The CRA can:

• Tell you about your legal rights, including your right to assessments and an IPP to identify the services and supports you need to return to the community,
• Help you with administrative and legal solutions, and
• Advocate for you while you are placed there.

The DC also has a Volunteer Advocacy Assistance Program. A volunteer advocate can help represent you at your IPP and when you want to move into the community.[[Section 4548(d); see also Volunteer Advocacy Services at: https://scdd.ca.gov/volunteeradvocacysevices/.]]

(8.24) Can I join the Self-Determination Program if I live in an institution?

Yes, if you are planning, or want to plan, to move to the community. If you live in a Developmental Center or a long-term health facility, like an ICF, tell your regional center service coordinator you are interested in the Self-Determination Program (SDP). You can start the person-centered planning process. You can request that the regional center begin making plans for your transition to the SDP if you are expected to move to the community within 90 days.