California’s protection & advocacy system
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Budget Advocacy: We will continue to focus on budget advocacy. We will monitor the budget process and use budget and legislative advocacy strategies to address the significant changes that occurred in the budget process in the last few years including any 2012 changes and any proposed reductions in 2013.
Funding for Our Programs: We will advocate for maintaining and increasing funding for our Office of Clients’ Rights Advocacy and the California Office of Patients’ Rights.
Integrated Employment Options: Many individuals with disabilities want competitive integrated employment instead of segregated employment at a subminimum wage. The Americans with Disabilities Act (ADA) integration mandate recognizes the rights of people with developmental disabilities to work in integrated community based settings and requires states to provide individuals with services and programs in “the most integrated setting appropriate to the needs of qualified individuals with disabilities.” This includes competitive integrated employment programs. Several states have already moved forward to implement policies which focus on integrated, community-based employment paying minimum wage or more, as the first option for individuals with intellectual and other developmental disabilities. This last legislative cycle, there was an effort to move forward with a bill that advanced a state Employment First Policy (which establishes a State policy where individual employment is offered before other service options, and integrated community employment is supported as the priority outcome in policy and practice.) The bill was held in the Senate Appropriations Committee.
We will work on legislative and policy changes to shift existing state resources to support integrated employment outcomes for people with developmental disabilities so that California, like other states, follow this national trend.
Students with Disabilities-School Discipline and Bullying: A student with a disability whose behavior is a manifestation of their disability is sometimes suspended or expelled from school. Many times, behaviors related to the disability are seen as disruptive or perceived as bullying. In other instances, students with disabilities are bullied by peers. During the 2012 legislative session there was legislation to address bullying. However, provisions related to students with disabilities were deleted.
We will work on legislative and policy changes which ensure students with disabilities receive appropriate assessments identifying behavioral needs, appropriate identification and implementation of behavioral goals to address those needs, and appropriate related services.
Advance Olmstead Implementation/Reduce Reliance on Institutions:
As part of the 2012-13 Budget Trailer Bill, the Department of Developmental Disabilities (DDS) proposed, and the Legislature adopted, provisions which reduce reliance on institutions. Some components of the DDS plan are: a moratorium on new admissions to developmental centers with limited exceptions; comprehensive assessments of the service and support needs and available resources for current developmental center residents; reducing reliance on service and supports ineligible for federal funding; and expanding community resources by maximizing the use of available state Community Placement Plan program resources to meet statewide specialized service needs.
However, the Department of Health Care Services (DHCS) has raised payments to skilled nursing facilities; has not limited admissions to nursing facilities; has failed to fully implement a transition program by which facility residents could leave; and has reduced or eliminated community alternative programs, all of which conflict with Olmstead principles. Similarly, county departments of mental health rely on the Institute of Mental Disease (IMDs), large locked skilled nursing facilities.
To address this, we will develop a strategy to move the state to emulate the progress made in the developmental disabilities system toward Olmstead implementation in other departments responsible for long term services and supports for individuals with disabilities.
Strategy on ADA Access Issue: In recent years, there has been increased attention on issues related to disability access and differing views from the disability community and businesses about solutions for addressing access violations. During the 2012 legislative session, legislation was introduced and passed that will: 1) require notice in leases for business tenants about any access inspections or lack of inspections;
2) require information about access requirements to be distributed with business licenses; 3) provide a safe harbor for businesses who have made efforts to proactively comply with access laws and fix the violations within 60 days including a reduction in damages for those businesses; and 4) clarify the deliverables of the California Commission on Disability Access (CCDA). However, it also includes a post-litigation damage reduction for small businesses that took no proactive steps to be accessible , which Disability Rights California opposed. The bill was passed even with the opposition of most disability groups. To address the ongoing issues related to disability access, we will work to change public policy and public perception by working with our partners to develop and implement strategies to educate the public and legislators about the importance of this issue.
Legislative and Policy Ideas by Advocacy Plan Principle:
1. Eliminate abuse and neglect and improve quality of care
A. Improve the quality of care and treatment in facilities and protect rights while working towards the goal of re-integrating into the community
Legislative Solution: Ensure “placement agencies” place adults with psychiatric or developmental disabilities in appropriate level of care and in homes that are safe and habitable.
We investigated a number of cases where people with psychiatric and developmental disabilities are referred by “placement agencies” to room and board homes in unsafe conditions. Placement agencies (as defined by law) include county mental health, county welfare, regional centers, public guardians, and hospital discharge planners among others.
It is a crime for a placement agency to place an elder in a licensed residential care facility for the elderly when the individual, because of his or her health condition, cannot be safely cared for in the facility.
To address the issue, we will amend current law about the responsibilities of “placement agencies” to ensure that they are placing any adult with a psychiatric or developmental disability, receiving services from a county mental health department or a regional center, in appropriate level of care and in facilities that are safe and habitable. We will expand the definition of ‘placement agencies’ or expand the list of responsible entities to include
non-public agencies providing case management services to people with disabilities, including those under contract with county mental health.
2. Increase access to benefits, services, and health care
A. Increase and maintain access to public and private health programs
Legislative Solution: Regional Center as fiscal intermediary for Medi-Cal authorized nursing services
For individuals who qualify for Medi-Cal home nursing, the shortage of nurses at the Medi-Cal rates is compounded by the Medi-Cal program’s delays in paying providers. Access is also compromised by Medi-Cal barriers and delays when qualifying individual contract nurses as providers.
Regional Center clients often cannot find nurses or home health agencies willing to provide services under the Medi-Cal program. Many nurses and agencies unwilling to deal directly with Medi-Cal are willing to work with regional centers. The pay is the same, they are paid faster, and there are fewer bureaucratic barriers.
We will work on a legislative fix so that a regional center can be reimbursed by the Medi-Cal program when a regional center pays for Medi-Cal authorized home nursing services. Currently, county Departments of Health can be reimbursed in this manner.
Non-Legislative Policy Solution: Problems with Home Nursing When Children Age No Longer Covered by Early Periodic Screening Diagnosis and Treatment (EPSDT)
Many children with medical needs are able to live at home with their families with home nursing. For Medi-Cal eligible children under age 21, home nursing is funded through the EPSDT program, and is administered by the In-Home Operations (IHO) Division of Department of Health Care Services (DHCS).
The number of home nursing hours that each child qualifies for is calculated by IHO’s application of an institutional level of care equivalent. The rate for the “institutional equivalent facility” determines the amount available to fund in-home nursing care. For example, a child determined to meet the level of care of a nursing facility level B will be eligible to receive in-home nursing hours up to the cost of the pediatric nursing facility level B rate.
Medi-Cal rates for adult facilities are much lower than for pediatric facilities. Thus, upon turning 21 and aging out of EPSDT, individuals who meet nursing facility level B level of care will see their nursing hours cut almost in half since the pediatric nursing facility level B rate is calculated by DHCS at approximately $110,000 per year, and the adult nursing facility level B rate is calculated at $56,000. For these individuals and their families this may result in placement in developmental centers or other institutions.
These Medi-Cal recipients should be able to transition from EPSDT home nursing to home nursing funded by the Nursing Facilities/Acute Hospital (NF/AH) Waiver, the Developmental Disabilities Waiver, or regional center. This transition should be seamless and should not result in a decrease in services.
We will work on a non-legislative policy fix to the waiver problem including looking at ways to improve coordination and planning between the DHCS and DDS. Further, we will work to ensure:
1) adequate and timely notice of the change in hours; 2) an opportunity to challenge the reduction, including aid paid pending; and 3) seamless transition to another source of funding for the lost hours, including a more appropriate waiver, such as the Developmental Disabilities Waiver or a regional center supplement of the hours lost.
Legislative or Policy Solution - Strategy Pending: Access to Independent (Conflict-of-Interest-Free) Ombudsman/Advocate
Many individuals with disabilities face problems with access to medically necessary health care when they are enrolled in Medi-Cal managed care. Serious individual and systemic problems have arisen with the transition of seniors and persons with disabilities into managed care; we foresee substantial problems with the upcoming mandatory enrollment of “dual eligibles” – people who have both Medicare and Medi-Cal. There is a Department of Health Care Services (DHCS) Office of the Ombudsman, which has administrative responsibility for member complaint resolution and coordinating all State hearing requests submitted by Medi-Cal beneficiaries enrolled in managed care plans. Our experience is that the Ombudsman is not independent, as it acts in defense of the State’s position against Medi-Cal beneficiaries.
Current law says “On a regional pilot project basis, to the extent authorized by law, the director may enter into contracts with one or more nonprofit organizations to perform the functions of the department's Office of the Ombudsman. These activities may include outreach, community education and training about health care consumer rights and responsibilities, including the production and distribution of consumer-oriented material, individual consumer assistance, including counseling, advice, assistance, education, advocacy, and referral as appropriate, establishing and operating a database to analyze the nature of the inquiries and requests for assistance, and training of department or county staff. To the best of our knowledge, DHCS has never started any pilot projects.
We will investigate the political and financial feasibility of requiring the state to, at a minimum, start pilot projects for an independent Medi-Cal Managed Care Ombudsman, as already authorized. This would ensure that the function of the Ombudsman office is solely to assist beneficiaries to get the care they need. It would eliminate the function of the Ombudsman office to defend the State against beneficiaries.
B. Increase and maintain access to effective, client-centered, voluntary community mental health services
Legislative Solution: Improved discharge planning
Clients with mental health needs may remain in a facility because an adequate discharge plan is not developed. Clients need an adequate discharge plan so that they can live in the community with the supports they desire and avoid recommitment. In 1997, the law was amended to delete substantive provisions which detailed specific components and requirements of an aftercare plan.
We will work to amend current law to reflect community integration principles and include language that requires facility staff to anticipate and address issues or barriers that clients with mental health needs may face if discharged. Any legislation will include wellness and recovery principles, reflect client participation, and be strengths-based. This fix could lead to a reduction in the time that an individual remains or is readmitted in a facility.
3. Increase access to education, housing, transportation, and employment
A. Increase children’s and youths’ access to appropriate education services in the most integrated environment
Legislative Solution: Behavioral Intervention Plans (BIP):
In the January 2012 budget, the Governor proposed to eliminate the state’s behavioral intervention plan “mandated costs for special education students. In 2010, we worked with the LAO and budget staff to craft budget trailer bill language (AB 1610) which clarified that state law and regulations merely implement the federal requirements and give specificity and guidance where the federal government gave none. Thus, there are not any additional state mandated costs.
The Administration did not believe that the language in AB 1610 fully alleviated the state’s obligation, so it put forward this proposal to eliminate it completely. This was rejected by the Legislature. In the last few weeks of this legislative session, the Senate Budget Committee on Education put forward trailer bill language which eliminated much of what the Administration considered state mandated costs for behavioral intervention services. The language repealed the state regulations on behavioral intervention assessments and planning, codified behavioral interventions that are currently prohibited in state regulations, and codified provisions about emergency interventions and reporting requirements in emergency. Because detailed state regulations were being eliminated, the bill language also required that the California Department of Education (CDE) had to follow guidance provided by the federal Office of Special Education (OSEP) when providing technical assistance to school districts on behavioral intervention assessments and planning. The trailer bill did not have the votes to get off the Assembly Floor. We understand that some version of these proposed changes will be reintroduced by the Legislature in January 2013. We will be reviewing and commenting any proposed changes.
Legislative or Policy Solution: Seclusion and Restraint in Schools
In the last few years, we sponsored or worked on bills to provide protections for the use of seclusion and restraint in schools. These bills included SB 1515 (Kuehl 2007), SB 1538 (Ma, Chesbro 2009), and AB 519 (Hernandez 2011). Because of the importance of this issue to students with disabilities and the attention it has received at the national level we will explore the possibility of legislation, informational hearings or investigation on available data of the use of seclusion and restraint in schools.
B. Increase the rights of people with disabilities to housing they can use and afford
Legislative Solution: Improve Accessibility in State Funded Housing
Federal law requires a higher level of accessibility (i.e. full accessibility) in 5% of housing developed with federal funding. There is no similar provision in California law. The easiest standard for the state to adopt and follow the federal law example is the Federal Uniform Accessibility Standards (UFAS) that applies to federal housing. This would make state funding requirements regarding accessibility consistent with federal requirements, ensuring greater accessibility and affordability in state funded housing for people with disabilities.
We will work on a legislative fix to require all state-funded housing to have some component of fully accessible housing, possibly 5% or 10% of the units.
4. Make sure the autonomy, preferences, and choices of people with disabilities are respected
A. Increase protection for the preferences, opinions, bodily integrity, and privacy rights of individuals with disabilities promote the rights of people with disabilities to direct their own lives
Legislative or Policy Solution - Strategy Pending: Universal criteria for involuntary administration of antipsychotic medication for all forensic commitments
The Department of State Hospitals (DSH) serves people with four types of forensic commitments: incompetent to stand trial (IST), mentally disordered offenders (MDO), sexually violent predators (SVP), and not guilty by reason of insanity (NGRI). DSH also provides treatment to California Department of Corrections and Rehabilitation inmates who need specialized mental health services.
For each of the commitments, excluding NGRIs who have no right to refuse medication, there are different standards for the involuntary administration of antipsychotic medication. People classified as a MDO or as a SVP can be involuntarily medicated if they either lack capacity or are a danger to others. People classified as IST can be involuntarily medicated for the same reasons, but can also be involuntarily medicated to produce competency for purposes of their criminal cases.
We will work for a legislative or policy change to create universal criteria for the involuntary administration of medication across commitment categories. A universal policy will likely reduce confusion among state hospital staff. The biggest impact of having a universal policy will be the inclusion of people classified as NGRI who currently have no right to refuse involuntary administration of psychotropic medication.
Legislative or Policy Solution: Lanterman-Petris-Short (LPS) Act Reform:
The Lanterman-Petris-Short (LPS) Act (Welfare and Institutions Code §5150 et al.) allows a qualified officer or clinician to involuntarily confine a person deemed to have a psychiatric disability that makes them a danger to himself/herself or others or is gravely disabled (i.e. unable to provide for their food, clothing or shelter). Certain provisions of the LPS Act have been broadly interpreted by county counsel, leading to inconsistent, and at times inappropriate, application of the civil commitment statutes in California. An individual who may be subject to involuntary civil commitment should expect equal protection under the law and consistent statewide application of the law, regardless of the county of residence.
We will work with stakeholders on legislative or policy changes that ensures statewide uniform application of the LPS Act to achieve equity and equal protection for all consumers. Some of the changes we may work on include setting uniform standards for those who generate 5150 holds and clarifying who can enforce, release or continue that hold; and providing for a better emergency response system to avoid unnecessary emergency room care.