California’s protection & advocacy system

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Legislative/Public Policy Platform for 2014

 

Budget Advocacy:

We will continue to focus on budget advocacy to protect the benefits and services used by Californians with disabilities. We will monitor the budget to avoid any new cuts to 2014programs and work toward restoration of prior reductions.

We will advocate for maintaining and increasing funding for our Office of Clients’ Rights Advocacy and the California Office of Patients’ Rights. 

 

Ongoing Advocacy – 2013 Sponsored Legislation:

SB 550 (Jackson):  We sponsored this bill last year to increase the supply of affordable accessible housing for people with disabilities including seniors.  The bill directs the California Building Standards Commission to adopt standards requiring public housing (housing built with specified sources of public money) to include at least 10% (no less than 1) units which are fully accessible for people with mobility disabilities and 4% (no less than 1) units which are fully accessible by people with vision or hearing disabilities. It also directs the Department of Housing and Community Development to adopt regulations which give priority for accessible units to persons with disabilities who need the access features in housing projects that have received a department loan or grant and have accessible units.

The bill was held on the suspense file and we were working on alternative language to pursue the bill.  Since we were not able to find an author, we will be considering a policy fix to address these issues.

DPH legislation:  Last year, we sponsored AB 961 which authorizes Department of Public Health (DPH) and Department of Social Services (DSS) to publish un-redacted citations involving facilities larger than 15 beds, without reporting client specific information, to ensure client confidentiality. It requires the DPH to issue survey findings and citations within an established timeframe, with more critical incidents (those involving death or serious injury) receiving priority. The bill also required DPH to publish a report or report to the Legislature on annual compliance with the established timeframes. The bill was held in suspense because of costs last year.

We drafted amendments to allow the legislation to move forward.  The amendments would require DPH to complete complaint investigations within reasonable statutory timeframes for incidents. Investigations of deaths would need to be completed in 90 days; incidents of serious injuries would need to be completed in 120 days; any other types of incidents would require that investigations be completed in 180 days.  There is also language in the proposal to allow for extensions when necessary.  While we were not successful in finding a legislator to carry a policy bill, we will advocate to address the issue in the state budget process.

 

New Legislation Proposals by Impact Area

 

  1. Stop discrimination, end institutionalization and increase community living choices
  1. Improving the choices for young adults with significant medical needs by removing the EPSDT “Cliff”

 

Children with the most significant medical needs can live at home with the support of home nursing.  For Medi-Cal eligible children under age 21, Early and Periodic Screening, Diagnosis and Treatment (EPSDT program) funds this nursing.  Home nursing hours are calculated based on the appropriate institutional level of care equivalent.  For example, a child eligible for nursing facility level B will be eligible to receive in-home nursing hours up to the cost of the pediatric nursing facility level B.

At 21, Medi-Cal recipients should be able to transition from EPSDT home nursing to home nursing funded by the Nursing Facility Acute Hospital (NF/AH) Waiver, the Developmental Disabilities Waiver, or regional center services.  Unless their need has changed, this transition should be seamless and services should not decrease. However, some individuals experience a devastating reduction in home nursing because:

  1. The rates for adult facilities are considerably lower than the pediatric facilities.
  2. The NF/AH waiver cost caps are lower than EPSDT service levels.
  3. Children who meet the pediatric Subacute level of care may not meet the more rigid adult Subacute level of care. 
  4. Though DHCS recently added the Continuous Nursing level of care to the NF/AH Waiver to address the needs of regional center consumers, DHCS has found almost all applicants did not qualify for the CNC level of care; and the cost cap may be insufficient for individuals with extremely high care needs.

 

In addition, DHCS and the Department of Developmental Services do not ensure that the “aging-out” individuals receive:

  1. Coordination between the two departments, which both have case management responsibilities;
  2. Adequate and timely notice of the change in hours;
  3. An opportunity to challenge the reduction, including aid paid pending; and
  4. Seamless transition to another source of funding for the lost hours, e.g. an adult waiver, the DD Waiver, or regional center supplement of the hours lost.

 

Proposals:

  1. Ensure that the aging-out individual experience no reduction or interruption in nursing services, absent a reduction in needs.
  2. Require that DDS and DHCS jointly develop a care plan, at least 180 days before an affected individual reaches his/her 21st birthday.
  3. If DHCS and DDS are unable to ensure that the individual will experience neither reduction nor interruption in nursing services, they must issue a timely and adequate notice, informing the individual of his/her right to file for a Medi-Cal or regional center administrative hearing, and the availability of aid paid pending the hearing decision.

 

We have not been able to find an author for the legislation, so we may  address this issue through the budget process.

  1. Equalizing funding for institutions and the equivalent community-based services

 

The Department of Health Care Services (DHCS) operates the Nursing Facility/Acute Hospital Home and Community Based Services Waiver (NF/AH Waiver), which provides services in the community for individuals who are eligible for placement in a nursing facility (level A or B, distinct part, or Subacute) or acute hospital.

Waivers must meet federal cost-neutrality requirements: the average per-person waiver cost cannot exceed the average cost of providing that care in an institutional setting. DHCS uses an individual cost cap rather than an aggregate cost cap.  DHCS has set seven cost-caps, depending on its determination of each NF/AH Waiver participant’s institutional level of care. These cost-caps are significantly below the actual cost of the equivalent institutions.

 

Institutional Level of Care

Annual Institutional Rate (based on 2005 NF/AH Waiver)

Annual Waiver Cost-Cap (Current in 2012 Waiver)

Nursing Facility (NF)-A

$34,388

$29,548

Nursing Facility (NF)-B

$56,074

$48,180

NF-B Pediatric

$110,280

$101,882

NF-Distinct Part

$124,342

$77,600

NF-Subacute, Adult

$271,697

$180,219

NF-Subacute, Pediatric

$282,574

$240,211

Acute Hospital

$437,757

$305,283

So, the Medi-Cal program pays $271,697 per year to Subacute facilities for adults over the age of 21 who are placed in those institutions. However, DHCS limits the equivalent waiver to $180,219 annually, a huge difference.
For certain individuals who require significant in-home care the low cost cap may mean the difference between remaining at home or being removed from home and family and forced into a more costly institutional placement.

In addition, there are about 80,000 residents of nursing homes paid for by Medi-Cal and thousands more living at home who qualify for nursing home care.  About one quarter, approximately 20,000 people, of nursing home residents say they are interested in returning to the community. However, there are only 3,300 waiver slots to serve those who want to get out of nursing homes or other institutions and those who want to stay out. There is usually no waiting list for those in nursing homes (for a number of reasons, including lack of knowledge about the waivers and lack of assistance to leave). There is a waiting list of approximately 700 people living at home who are qualified to get nursing home care but who want to stay at home and cannot get waiver services.

 

Proposals:

 

  1. Require DHCS to use NF/AH Waiver cost caps that are commensurate with the current institutional rate for the equivalent level of care, increase the cost caps when the institutional rates increase, and require DHCS to offer exceptions to the cost cap for an individual’s level of care when necessary to preserve health, safety, and/or home placement
  2. Require DHCS to increase the number of slots on the NF/AH Waiver (especially the NF-B level of care) to remove the waiting list for community residents and ensure that anyone leaving a nursing home has access to a waiver slot if those services are needed.
  1. Removal of Stigmatizing Mental Health Terms from California Codes

 

There is a significant amount of offensive and outdated terminology related to people with mental health conditions in state statutes. Such terms should be removed and replaced with contemporary terminology. For example, some California code provisions use the term "insane" or "insanity" generically rather than as a more specific commitment criteria of "not guilty by reason of insanity." In the latter context, "insanity" has a specific legal meaning and consequence, whereas in the former context it is outdated and stigmatizing. Code provisions also include the following terms: "insane asylums", "institution for the feebleminded or insane," "mental defect," and "mentally defective."

 

Proposal:

We will work to amend current statutes so that stigmatizing terms are replaced with people first language that reduces mental health stigma and discrimination. We will likely do this over time beginning with general dehumanizing terms or areas of the law and leading towards changes in other more specialized areas of the law, e.g., specific areas of the Penal Code.  Assembly Member Chesbro has agreed to carry the legislation.

  1. Increase access to education, housing, transportation, and employment

 

  1. Prohibit the State from Contracting with Employers that Pay Sub-minimum Wages and Prohibit Schools from Using Special Minimum Wage Licenses

People with disabilities participate in the workforce at a far lower rate than the general population.  A comparison of workers with disabilities, with the working age population overall, shows that working age people with disabilities participated in the workforce at a rate less than one half that of the general population.   Data also indicates that working age Californians with developmental disabilities have an unemployment rate/underemployment rate as high as 80 percent.  Experience shows however, that employees with disabilities, when provided the proper training, tools, and reasonable accommodations can be as productive as people without disabilities.

Federal law allows the Secretary of Labor to grant special wage certificates to entities that provide employment to workers with disabilities.  These certificates allow entities who have them to pay individuals with disabilities at rates that are lower than the Federal minimum wage .  According to the rules established under section 14(c) of the Fair Labor Standards Act of 1938, employers determine the special wage to be paid to an employee with disabilities, with approval from the Department of Labor, using complex methods that established productivity benchmarks.

State law, through the California Department of Industrial Relations, allows the state to issue a special minimum wage license to individuals with physical and/or developmental disabilities as well as entities (non-profits and schools) that employ individuals with physical and/or developmental disabilities   The special minimum wage licenses allow the holders of those licenses to be paid less than minimum wage.

There are school districts in California that use 14(c) certificates and special minimum wage licenses to pay students with disabilities sub-minimum wages and that contract with entities that do so.

 

Proposals:

 

  1. To ensure that individuals with disabilities are provided employment opportunities where they are paid at least minimum wage and not productivity rates, we propose amending the state law to prohibit any state employer from contracting with any agency that uses a special minimum wage license but to preserve a preference for people with developmental disabilities.  Senator Ben Hueso has agreed to author  the legislation.
  2. We propose amending the state labor code to prohibit the Department of Industrial Relations from issuing a special minimum wage license for use by any public school and to prohibit public schools from contracting with any agencies that use special minimum wage licenses, provided that doing so does not impede access to community based integrated work programs.
  3. We propose examining whether there are barriers to people with developmental disabilities accessing the Ticket to Work Program that can be addressed legislatively.

We are moving forward with these approaches as a first step to address the use of segregated employment and sub-minimum wage.

 

  1. Increase students’ access to appropriate education services.

 

  1. Ensure Students with Disabilities Temporarily Enrolled in Court Schools Receive Appropriate Special Education Services

Many students with disabilities are in juvenile court schools because of behaviors that are a manifestation of their disabilities. Many of these students have IEPs or are in the process of being evaluated for special education at the time they are placed in the juvenile court school. Some students are there for very short periods, ranging from one day to two weeks, while the juvenile court determines the disposition of the case. Unfortunately, any time a student is enrolled in the court school, for even one day, they may be disenrolled from their school district of residence.

Under current law, when a student returns to his school district of residence, the school district does not have to provide the actual services noted in the IEP that the student received prior to the brief stay in juvenile hall, but must provide services “comparable” to the previously approved IEP. In other instances, the student’s IEP has been amended by county office of education to reflect the child’s placement in juvenile hall and may be vastly different from the IEP that was developed by the child’s IEP team in the district of residence.

 

Proposal:

 

We will work on a legislative fix to require that, if a special education student transfers back to their school district of residence after a spending two weeks or less in a juvenile court school, the school district must continue to implement the IEP that was approved prior to the stay at juvenile hall. The district of residence would remain responsible for any assessments or hold any IEP meetings that were pending at the time the student was placed in the juvenile court school. The timelines would be extended by the amount of time the student was in the court school.

  1. Make sure the autonomy, preferences, and choices of people with disabilities are respected

 

  1. Involuntary Medication Due Process Rights for 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.

Though meetings with stakeholders and other interested parties, we will work on a systemic reform to change public policy and 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.

 

  1. Increase Culturally Competent and Geographically Accessible Services.

 

  1. Amending the Regional Center Performance Contract Requirements and Requiring Regional Centers to Provide Purchase of Service Expenditure Data by Residence Type

The issue of equal access to services for Californians with developmental disabilities from diverse communities has been the subject of conversation and study during much of the past two decades. 

In 2012, Disability Rights California successfully worked to require that regional centers and DDS collaborate annually to compile and report data relating to purchase of service authorization, utilization, and expenditure by each regional center with respect to key categories, including: age, race/ethnicity, primary language, and disability detail. 

Welfare & Institutions Code Section 4519.5 also requires regional centers to report the number of individuals by those categories who are regional center clients but who receive no purchase of service funds.  Regional centers are then required to meet with local stakeholders to discuss the data.    

Current law does not require regional centers to compile and post data by residence type.    Regional centers state that residence type disproportionately impacts the purchase of service (POS) data.  The general thought is that families from communities of color prefer living in the family home and, therefore, automatically should have reduced POS.

Some regional centers have also not posted the preceding years’ data on their websites.  We think it’s important that all 21 regional centers (and  the Department of Developmental Services (DDS)) do so. This will give the public and the advocacy community the means to review and compare how the regional centers are performing. 

Current law does not require the regional centers, as part of its annual performance contracts, to review specifically, culturally and linguistically appropriate services and supports that meet identified needs.  It also does not require the regional centers to establish specific and measurable objectives to address any racial, ethnic, and language disparities. 

Given the POS disparity data reported under W & I Sec. 4519.5 and information gathered at public hearings, we believe such objectives are necessary.  Additionally, we believe that DDS should provide a copy of any correction plans of regional centers that are on probation to the Office of Client’s Rights Advocacy. DDS currently provides such copies only to the area board.

 

Proposals:

 

The legislative proposal would require that the report data by residence type.   Requiring regional centers report residence type along with age, race or ethnicity, and disability of the consumer will allow greater understanding of how disparity in POS dollars is impacted based on choice of living arrangements. 

The legislative proposal would require the regional centers, as part of its annual performance contracts, to review specifically, culturally and linguistically appropriate services and supports that meet identified needs.  Additionally, it requires regional centers to establish specific and measurable objectives to address any racial, ethnic, and language disparities.  Finally, it would require that DDS provide a copy of any correction plans of regional centers that are on probation to the Office of Client’s Rights Advocacy.

Disability Rights California would co-sponsor the measure with Public Counsel Law Center and Special Needs Network, both non-profits located in Southern California.  Senator Carol Liu has agreed to author the measure.

 

EPSDT is a program for those under the age of 21 years

See Section 14(c) of the Fair Labor Standards Act of 1938 (29 U.S.C. 214(c))
See also: http://www.dol.gov/whd/regs/compliance/whdfs39.pdf

See California Labor Code Section1191 and California Labor Code Section 1191.5.See also: http://www.dir.ca.gov/iwc/EXCERPTS.htm