Legislative Platform for 2011
In the past, we asked Disability Rights California’s substantive staff experts and board members for sponsored legislation ideas to develop our legislative platform. This year, staff and board members provided us with ideas for both legislation and policy changes that are tied to the principles contained in our Advocacy Plan.
We will use the adopted legislative platform to guide our legislative and policy work for the coming year and figure out the best fix for ideas presented in the platform. Some ideas in the platform may be appropriate for sponsored legislation, some for insertion into bills sponsored by others, or some may be pursued through other policy arenas such as state taskforces or committees.
While the Board will approve the overall platform, the number of ideas that we move forward with will depend on staff resources. If we decide to address any of the ideas through sponsored legislation in 2011, we will need to find Legislators who are willing to author the legislation. This will take place in late September or early October.
The platform will be discussed by the Legislation Committee and Board at its September meeting for concurrence, additions, and approval.
Ongoing Legislative Advocacy:
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 2009 and 2010, as well as any proposed reductions in 2011.
Funding for Our Programs: We will continue to advocate maintaining and increasing funding for our Office of Clients’ Rights Advocacy and the California Office of Patients’ Rights.
Legislative and Policy Ideas by Advocacy Plan Principle:
1. Stop discrimination, end institutionalization, and increase community living choices
A. End institutionalization and increase access to culturally appropriate and safe community living with supports chosen by the person with a disability
Allow group home providers, day program providers, or independent living services providers (ILS) to administer certain emergency medications
Change the current practice so that a group home provider, day program provider, or an independent living services provider (ILS) can be trained and allowed to administer emergency glucagon (diabetes), diazepam gel (diastat) for status or cluster seizures, and epinephrine auto injectors (EpiPens). This change builds on the positive experiences of the IHSS program where physician authorized interventions such as shots can be administered by laypersons trained to provide such services for a particular individual.
Currently, individuals with developmental disabilities needing this type of care must be moved to a more restrictive living arrangement. This change would ensure appropriate intervention by trained staff and allow the person with the disability to remain in less restrictive community based settings.
2. Eliminate abuse and neglect and improve quality of care
A. Eliminate abuse and neglect
Change the California Mandated Reporting Act
The Elder Abuse and Dependent Adult Civil Protection Act (the Mandated Reporting Act) outlines the system for reporting and investigating allegations and incidents of abuse and neglect. If the abuse occurs in a nursing home, the care staff witnessing the incident or who learn of the abuse (i.e., the mandated reporter) must notify either the local long term care ombudsman or the local law enforcement agency.
Most incidents are reported by nursing home staff to long term care ombudsmen. Unfortunately long term care ombudsmen lack the skills and training to know when a criminal investigation is needed and the skills to know when an incident should be referred for prosecution. Thus, many incidents of abuse and neglect go unresolved and prosecuted when they should be.
To address this issue, we will look for opportunities to reform the Mandated Reporting Act so that incidents of known or suspected abuse occurring in a long-term care facility must be reported to both the long term care ombudsman and local law enforcement. With timely and thorough criminal investigations, there will be more prosecutions, thereby protecting future nursing home residents from similar abuse.
Additionally, we will also look for opportunities to address the other recommendations for reform in our report: “Victimized Twice: Abuse of Nursing Home Residents, No Criminal Accountability for Perpetrators.”
B. Improve the quality of care and treatment in facilities and protect rights, while working towards the goal of returning to the community
Ensure access to all un-redacted incident reports of abuse, neglect, injury or death occurring in a program, facility, or service serving people with disabilities
The Department of Public Health (DPH), Licensing and Certification routinely (for decades) send Disability Rights California copies of citations of deficiencies issued to facilities. We review these documents to: 1) monitor health and safety issues and quality of care trends involving people with disabilities living in facilities; 2) identify individual cases of abuse and neglect for investigation; and 3) monitor the oversight by DPH of care facilities.
Recently DPH began sending redacted versions of the citations of deficiencies when they pertain to individuals with developmental or mental health disabilities. All other citations involving persons with other types of disabilities are un-redacted when we receive them.
State law limits disclosure of confidential information about persons with developmental or psychiatric disabilities obtained by DPH in support of issuing a statement of deficiency or citation. However, under state law DPH can disclose confidential information to Disability Rights California pursuant to our state and federal statutory access authority.
Disability Rights California has the access authority to conduct investigations into allegations of abuse or neglect involving people with disabilities if there is probable cause to believe abuse or neglect occurred. DPH issues citations after an investigation into a complaint about a matter that poses a threat to the health, safety, security, welfare, or rights of a resident, has been substantiated. We believe citations are sufficient evidence of probable cause to prompt an investigation.
DPH agrees that Disability Rights California has access to un-redacted citations and statements of deficiencies pursuant to an abuse or neglect investigation. DPH also agrees that citations are sufficient evidence of probable cause to support an investigation. However, DPH wants Disability Rights California to request un-redacted citations each time we get a redacted one, stating separately for each that the redacted citation is evidence of probable cause. This is cumbersome, costly and not a good use of staff resources.
To address this, we will look at ways to clarify state law so that 1) Disability Rights California has access to all un-redacted reports by an agency charged with investigating reports of incidents of abuse, neglect, injury or death occurring in a program, facility, or service serving people with disabilities, and 2) such access need not be based on a separate assertion of probable cause for each request.
3. Increase access to benefits, services, and health care
A. Increase and maintain access to government benefits and
B. Increase and maintain access to public and private health programs
Authorize Medi-Cal reimbursement to a regional center when it pays for Medi-Cal authorized home nursing services
For individuals who qualify for Medi-Cal home nursing, the nursing shortage is compounded by Medi-Cal’s delays in paying providers and barriers to qualifying nurses as providers. Regional Center clients have difficulty finding nurses or home health agencies willing to provide services directly under the Medi-Cal program because of these issues. On the other hand, many nurses and agencies that are unwilling to deal directly with Medi-Cal are willing to work with regional centers. Although the pay is the same, they are paid faster and there are fewer bureaucratic barriers. We will explore the possibility of and look for opportunities that allow regional centers to pay for such services and seek reimbursement from Medi-Cal.
Require health insurers to cover durable medical equipment (DME) and to impose no annual dollar caps that are less than the overall cap for the policy.
Group plans including durable medical equipment uniformly have annual caps of $2000 or $2500 and sometimes with co-pays up to 50% in addition to any deductible.
We first introduced this proposal to address the issue of caps in 2007 with SB 1198 (Kuehl). The measure made it to the governor’s desk but was vetoed. In 2009, we introduced AB 214 (Chesbro) which made it to the Assembly Appropriations Committee. In 2010, the DME bill did not survive, not because of its contents, but because of a legislative procedural rule. The rule prohibits a substantially identical bill from being introduced again in the same session if it failed earlier in the session. The 2009-2010 legislative year was the second year of a two-year session, and since the DME bill failed in the first year (2008-2009) of the 2008-2010 session, we could not proceed with the bill.
If we move forward with reintroducing this legislation, we will work with our author to show that the measure would actually save the state money. We believe that the state would likely spend less because it would not have to spend state dollars to purchase DME through state programs, such as the Department of Rehabilitation, because some individuals who have private insurance could purchase the DME through their private coverage if caps were raised. We may co-sponsor it with Disability Rights Education and Defense Fund and other organizations, like the Multiple Sclerosis Society.
Ensure that individuals on Supplemental Security Income (SSI) are eligible for food stamps
Currently, people on SSI are ineligible for food stamps. This continues to be the case even though the SSI benefit has been reduced over the past few years and will be reduced again this year. The price of food and rent has increased, which makes it very difficult for people on SSI to provide for their food, clothing and shelter. Currently the legislature is looking at this issue because the state could get more federal dollars if people on SSI were eligible for food stamps. We will work with the legislature and related state agencies on this issue to ensure that people with disabilities receive this benefit so they can meet more of their basic needs in order to remain and survive in the community.
4. Increase access to education, housing, transportation, and employment
A. Increase children’s and youth’s access to appropriate education services in the most integrated environment
Proposal to address truancy issues for students with disabilities
Some students with disabilities have difficulty with regular attendance in school because of their disability. Sometimes these problems are due to temporary conditions related to the child’s disability and require temporary adjustments to the student’s individualized education program (IEP), such as a short term home instruction program. Other times these problems are due to inappropriate educational placements or a lack of appropriate services, such as a behavioral support plan.
Instead of getting their attendance problems addressed in an IEP meeting, however, many special education students are reported as truant to School Attendance Review Boards (SARBs) or probation departments/district attorney offices. Some of these students end up in juvenile court and their parents may face criminal charges and fines as a result of the student’s alleged truancy. We will look for legislative and policy fixes to ensure that issues of truancy are addressed in the IEP process rather than referrals to SARBs.
5. Enforce Rights
A. Make sure that there is access to courts, administrative agencies, and legal services so that individuals with disabilities can defend and enforce their rights
Create uniform standards for people with disabilities who are committed to developmental centers that ensures protections of due process rights
Everyone who is committed to a developmental center is entitled to due process protections. This includes the right to annual review of the placement, a court appointed lawyer, and the right to a jury trial. This is important for people in a developmental center because confinement takes away their right to freedom.
Currently, the three main ways people can be committed are:
In re Hop; The California Supreme Court decided every person who was not a true voluntary admission to a Developmental Center (e.g., admitted by their parent or conservator), is entitled to a judicial hearing upon admittance as to whether they are admitted because of a developmental disability, being gravely disabled, or because they are a danger to self or others, placement in a state developmental center was warranted;
Welfare and Institutions Code 6500 proceedings (if they are considered to be a danger to themselves and others); and
LPS proceedings (when someone is considered to be gravely disabled and unable to provide their own food, clothing or shelter).
While everyone gets due process protections when initially committed to a developmental center, not everyone gets those same protections once they are there. For example, people who are committed under the 6500 statute get annual judicial review with full due process. This is because the law explicitly says this. The same is true for people committed under the LPS Act.
However, the “voluntary” In re Hop commitments are handled differently. Annual judicial reviews are not automatic. Some people get annual review with due process protections and some people only get a judicial hearing when they are placed.
Recent case law also says for In re Hop commitments, the way to resolve a placement decision when parents/conservators want the client to stay in the developmental center is the administrative fair hearing process, not through a judicial hearing.
During this administrative hearing process, there is no right to court appointed lawyer or to a jury trial. Case law also says that an adverse fair hearing decision about placement, takes away the ability for someone to request a judicial hearing regarding their release.
The problem with current law is that it treats people who live in developmental centers differently. People committed under the 6500 and LPS statutes have the automatic right to have a court review their placement, but people who are committed under In re Hop do not.
A legislative fix would be to create uniform standards for people who are committed to developmental centers that ensures all people who reside in developmental centers are treated the same. This includes the right to full due process protections, including annual review of their placement, the right to court appointed counsel, and the right to a jury trial.
Develop guidelines to clarify the Lanterman Act complaint process to so regional center clients can file complaints and achieve meaningful outcomes
The Lanterman Act allows regional center consumers to file complaints with a regional center based on procedural violations for such issues as the failure to provide the services and supports agreed to in the Individual Program Plan (IPP), or failure to comply with a fair hearing decision.
Currently, complaint procedures do not provide clear guidelines to ensure that complainants will have a fair opportunity to challenge procedural flaws. Without standards detailing what the complaint and findings must contain, the process is difficult to use. Often consumers are not aware of how much detail to provide in the complaints or what sorts of remedies they can ask for. Therefore, many consumers do not use the current process.
Additionally, without a specific set of guidelines instructing consumers about the complaint process, each regional center may approach complaints in a different way. This can result in the complaint process being different in each regional center. To address this issue, we may work with the Department of Developmental Services and other stakeholders on administrative or policy reform.
Improve the Role of Administrative Law Judges in the Department of Developmental Services (DDS) Fair Hearing Process
In some administrative hearing contexts such as Department of Social Services (DSS) hearings, Administrative Law Judges (ALJs) have a direct and well defined obligation to make a complete record. DSS ALJs have to seek out certain crucial information from the individual rather than be a passive judge. This is critical when a claimant is not represented by counsel and does not understand due process rules. ALJs do not take on this proactive role in DDS hearings.
To address this issue, Disablity Rights California may convene a stakeholder group consisting of, among others, former ALJs from other departments, such as DSS, who have expertise in the less formal model of administrative hearings. The stakeholder group would look at ways to maximize the role of ALJs to ensure the hearing is fair, especially when the claimant is not represented by counsel, by clarifying that it is the duty of an ALJ to establish a reasonably full administrative record.
Require regional centers to use standardized notice procedures and forms
Statewide, there is a pervasive problem with the adequacy of the notices sent to regional center clients and applicants related to service termination, reduction or modification and eligibility denial. The problems include, but are not limited to: the failure of notices to clearly state what specific services are being terminated, reduced, or changed and why (including the legal basis for such action or the correct legal basis); when the effective date of the proposed action will take place; information informing the individual that he or she has the right to appeal and may do so up to 30 days from the date of the notice and if the person files with 10 days of receiving the notice, may get aid-paid pending, among other defects in the notices.
For clients and applicants who do not speak English, the notices are not consistently provided in a language that they can understand. The notices are also often complicated and not accessible to many people with developmental disabilities.
The Department of Developmental Services (DDS) developed a notice of action form and had the form translated into various languages to help alleviate this problem. Currently, many regional centers do not use the DDS form. We may work with DDS to ensure that the standard form is used by all regional centers that addresses the deficiencies noted above.
Expand the role of regional centers in accessing generic services for clients and settling interagency disputes
Current law provides for regional centers to pursue generic services to secure these services for clients. It also provides for regional centers to pursue settlement of claims on behalf of clients when there is a dispute as to which agency is responsible. These provisions only apply to children under 6 years of age.
We may pursue a legislative or policy change to expand these regional center duties to all regional center clients. This could save money because it would enable regional centers to more quickly secure generic funding for a variety of services. It could also reduce regional center appeals because clients would not try to get these generic services from regional centers.
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