DISABILITY RIGHTS CALIFORNIA 2014 COMMENTS ON THE DEVELOPMENTAL DISABILITIES BUDGET

 
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DISABILITY RIGHTS CALIFORNIA 2014 COMMENTS ON THE DEVELOPMENTAL DISABILITIES BUDGET
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              DISABILITY RIGHTS CALIFORNIA
    2014 COMMENTS ON THE DEVELOPMENTAL DISABILITIES
                         BUDGET

                                       May Revision 2014

Background

Disability Rights California is committed to ensuring that people with
disabilities have access to services and supports which enable them to live
in the community. We believe that California’s budget and policy decisions
must promote integration and independence consistent with the Americans
with Disabilities Act (ADA) and the Olmstead decision.1

We are pleased that the Administration and Department of Developmental
Services has begun the process to implement the recommendations in the
January 2014 Developmental Center Task Force Report, including
initiatives that call for: 1) the development of new models of behavioral care
in the community, including enhanced behavioral supports homes and
community crisis homes; 2) working with stakeholders on potential projects
for repurposing developmental center property to develop community
housing; and 3) the development of additional services and supports in the
community using existing models of care, particularly Adult Residential
Facilities for persons with special health care needs. We are pleased that
the state has identified its role in providing acute crisis services as “can’t
1
  OLMSTEAD V. L. C. 527 U.S. 581 (1999): The Supreme Court held that under the Americans with
Disabilities Act, individuals with disabilities have the right to live in the community rather than in
institutions. In addition, the integration mandate of the Olmstead decision requires that states develop
comprehensive plans to end unnecessary institutionalization at a 'reasonable pace' with the goal of
integrating individuals with disabilities into mainstream society to the fullest extent possible.

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say no” placements; we believe a better approach would be to develop
community based crisis facilities in the community with a capped number of
beds, rather than solely expanding those services to an additional
developmental center.

Additionally, with the reduction in reliance on state institutions, the
community system is the primary safety net for regional center consumers.
We are concerned that the Governor’s budget does not invest in core
community services and that the failure to do so jeopardizes access to the
quality services necessary to protect consumers’ health and safety. We
look forward to participating in a stakeholder process to identify the ways to
strengthen the community service system and encourage the prompt
convening of a stakeholder group and more importantly the quick
implementation of the group’s recommendations.

As a member of the Lanterman Coalition, we support the recommendations
in the Coalition’s budget letter. [See letter from the Lanterman Coalition on
the California Budget and keeping the Promise to Californians with
Developmental Disabilities March 10, 2014.] We want to call your attention
to two urgent issues and encourage a resolution of these items in this
budget: 1) payment of overtime for IHSS workers and other similar support
services and; 2) nursing services for consumers whose needs are higher
than the current Department of Health Care Services (DHCS) adult home
and community based waivers. These issues are discussed below in the
Community Services portion of our testimony.

Below we provide comments on the DDS budget in the May Revise
including our recommendations and concepts to implement the Task Force
Initiatives. We also provide additional recommendations which will
strengthen the community-based services.

Developmental Center Budget
Disability Rights California Recommendations and Concepts to
Implement the Developmental Center Task Force Report

Disability Rights California supports the Developmental Center Task Force
Report. We are particularly pleased that the May Revisions identifies some
specific initiatives to begin the implementation of the report. DRC
recommends that language implementing the following concepts be

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adopted by the Legislature and the Administration to ensure effective
implementation of key initiatives.
Comprehensive Assessments to Be Provided to Courts for all Commitment
Reviews; Transition Planning Meetings and Report of Unmet Need

The Trailer bill adopted in 2012 requires regional centers to conduct
comprehensive assessments of any consumer residing in a developmental
center. See Welfare and Institutions Code 4419.25(c) (2) (A). All
assessments must be completed by December 31, 2015. We understand
that by June 30, 2014 about 75% of the assessments will have been
completed. These assessments provide critical information about each
developmental center resident including the services and supports the
consumer needs to successfully transition to a less restrictive setting. We
suggest the following:

  1.Provide the court with a copy of the comprehensive assessment and
     any updates during all judicial reviews of a consumer’s commitment.
     Current law requires the assessment be provided to the Individual
     Program Plan team and to the court as part of a Writ of Habeas
     Corpus hearing. The assessments are not provided to the court
     during other reviews of the consumer’s commitment. As a result the
     court will not have relevant information when it considers whether an
     extension of the commitment or other less restrictive placements are
     appropriate.

  2.Require that the IPP team following the completion of an initial
     comprehensive assessment and updated assessment discuss and
     develop a transition plan for the consumer as a means of ensuring
     that the services and supports are in place for the consumer to
     transition to the community. Current law requires both an initial
     comprehensive assessment, and that the assessment be updated at
     the consumer’s annual IPP. The proposed change would require
     discussion and development of a plan for transitioning the consumer
     to the community.

  3.Amend current reporting requirements to ensure the collection of data
     about the services and supports developmental center residents need
     to transition to the community. Regional centers and DDS are
     currently required to report outcome data related to the assessment
     process set forth in Section 4418.7 (Regional Resource Development

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Project assessments prior to admission to Fairview), including the
     number of consumers who received assessments pursuant to Section
     4418.7 and the outcomes of the assessments. Data currently is not
     collected and reported concerning the comprehensive assessments
     required by Section 4419.25(c) (2) (A). We suggest amending the
     Section 4418.25 reporting requirements to include the number of
     consumers who received comprehensive assessments and the
     outcomes of the assessments including the services and supports
     identified for the consumer to live in the community and information
     about whether or not those services are currently available or must
     be developed.
Funding for Regional Center Clients’ Rights Advocates to Attend
Developmental Center IPP Meetings and Court Commitment Proceedings

An important component to implement the Task Force Report is ensuring
the participation of the regional center clients’ rights advocate in the
Individual Program Plan (IPP) meeting and any court proceeding. Over the
past two years, the Disability Rights California’s Office of Clients’ Rights
Advocacy (OCRA) assisted all 9 clients committed to Fairview
Developmental Center and assisted more than 75 individuals committed to
developmental centers or other restrictive living arrangements. These
cases are often time consuming and not easily resolved.

OCRA provided this assistance without additional resources and on top of
the assistance is has provided in more than 19,000 matters involving
regional center consumers living in the community. OCRA will not be able
to provide increased assistance to consumers living in DCs who will be
transitioning to community living arrangements without additional
resources. While the state currently provides for a Developmental Center
Clients Rights Advocate (CRA) through a Memorandum of Understanding
(MOU) with the Area Board, a primary focus of their work is the rights of the
consumer in the DC rather than removing barriers to community
placement. We request funding for one regional center clients’ rights
advocate to assist consumers at Fairview and one regional center clients’
rights advocate to assist consumers at Sonoma.

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Revise Notification to Regional Center Clients’ Rights Advocates of
Placement in Restrictive Settings

The regional center clients’ rights advocates currently receive notice of
admissions to the Fairview acute crisis (4418.7(e)(1) and Institutes of
Mental Disease (IMDs) (4648(a)(9)(C). The timelines for notifying the CRA
are unspecified leading to inconsistent notification and sometimes no
notifications at all. We propose amending relevant WIC sections to include
timelines for providing notice as a means of ensuring that regional center
CRA’s receive notice of admissions to restrictive placements and can
participate in any planning meeting.

To implement the Task Force initiatives, we think the state will likely
develop other kinds of crisis homes and believe that the regional center
CRA should receive notice of admissions to these restrictive facilities within
a defined timeframe. Timely notice will enable the clients rights advocate to
participate in the individual program plan meeting unless the consumer
objects on his or her own behalf.
Community Placement Plan Funding (CPP)

Disability Rights California was pleased to see a 13.0 million ($12.9 million
GF) re-appropriation for the community placement plan funding to reflect
proposals that address recommendations in the Developmental Centers
Task Force Report. From our experience, it appears to take 2-4 years for
CPP homes to be developed. We strongly recommend exploring options,
with enhanced accountability on the part of the regional centers, to
expedite the approval process for these homes.
Alternatives to Acute Crisis Admissions to Developmental Centers

As noted above, by statute, acute crisis admissions are allowed at Fairview
Developmental Center. The May Revision has a proposal to create an
additional acute crisis facility at Sonoma Developmental Center. Regional
centers report that the admission process does not work and results in
placements to large IMDs such as College Hospital.2 While we are pleased
that the state has identified its role in providing acute crisis services as
“can’t say no” placements we believe a better approach would be to
develop community based crisis facilities in the community with a capped

2
    College Hospital Cerritos is a 187-bed, free-standing Psychiatric Hospital in Southern California

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number of beds, rather than utilizing developmental centers for this
purpose.
Use of Developmental Center Property to Develop Mixed Use Communities

Harbor Village is a successful mixed use community on Fairview
Development Center property. The Department of Developmental Services
(DDS) and the Department of General Services (DGS) proposed to lease
approximately ten additional acres of underutilized property at Fairview for
development of an affordable housing project with 20% of the housing set
aside for regional center consumers at a subsidized rental. While this
project commonly called Shannon’s Mountain was bid, the bid was stopped
due to legal concerns. DRC supports this mixed use development and
encourages budget TBL to allow the project to move forward and to
address any statutory constraints concerning development.
DRC Comments About Secure Perimeter Facilities

State statute and regulation currently allow for 100 beds within secure
perimeter facilities. No facilities currently exist and some are expected to be
developed within the year. The Centers on Medicaid and Medicare (CMS)
have issued a letter expressing considerable concern regarding the Home
and Community Based Waiver (HCBS) eligibility of secure perimeter
facilities and/or concern about compliance with the new HCBS community
regulations. Disability Rights California would be concerned about any
proposal to expand the 100 bed cap until the CMS issue is resolved and
there is a chance to evaluate the effectiveness of services in secured
perimeter settings.
Compliance with Current Laws: Seclusion and Restraint

Finally, as the state develops new facilities and crisis services, the state
must ensure that any new facilities and crisis services comply with existing
state and federal seclusion and restraint rules and regulations.
Community Services Budget

As we have noted, when California reduces its reliance on state institutions,
the community system plays a more integral safety net role. Therefore, the
budget must invest in community services to ensure that Californians with
developmental disabilities have access to the quality services they need
and are entitled to under the Lanterman Act. Below we highlight many of

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the items that we commented on during the January Budget Hearings
which we believe are still critical to the state fulfilling its safety net role, but
have unfortunately not been address in the May Revision.
Regional Center Consumers, IHSS, and Fully Funding the Cost of
Overtime

The IHSS program is the foundation of California’s home and community
based services. Most regional center consumers live in their family home.
Regional center consumers make up 9% of the IHSS case load. 3
Approximately twenty percent of Regional Center consumers use IHSS as
a generic service.4

The federal Department of Labor recently issued final rule mandates that
personal assistance workers be paid overtime, with limited exceptions
effective January 2015. In response to this rule, the governor’s budget
proposes to ban overtime in IHSS, limiting a provider to no more than 40
hours work per week. This limitation would harm consumers with
developmental disabilities and their families and service providers.

    1.Regional center consumers who need more than 40 IHSS hours per
       week will have to find one or more new workers who may not
       understand or be trained to address the needs of the consumer. The
       most personal and intimate care, often done by family, will have to be
       done by strangers. Family members who typically have been the
       IHSS providers for regional center consumers, many of who are
       young children that live at home, will not be permitted to work more
       than 40 hours per week.

    2.Even consumers who use fewer than 40 hours per week, but whose
       providers work for more than one consumer, may be forced to hire
       additional providers because the overtime calculation is tied to the
       worker and overtime is triggered by the total hours worked by a
       worker.

3
 http://www.lao.ca.gov/handouts/socservices/2011/2011_12_IHSS_Budget_01_25_11.pdf at page 8
4
 http://www.lao.ca.gov/handouts/socservices/2011/2011_12_IHSS_Budget_01_25_11.pdf. This report
says 9% of the 456,000 have intellectual or developmental disabilities. That equals 41040 individuals
which is almost 20% of regional center consumers on the regional center caseload.

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3.Households which depend on the IHSS income of the caretaker to
      keep the IHSS consumer at home with family may lose up to 40% of
      their income. If the family loses the income and their home,
      consumers face a risk of institutionalization.

   4.While in the past regional centers have received additional funding to
     back-fill budget limitations on generic resources, this will be harder to
     achieve given the 2009 limitations which capped respite hours. The
     combined impact of the IHSS overtime prohibition and respite cap will
     stretch many families’ emotional and financial resources to the point
     that maintaining the individual in the family home is no longer
     feasible. As a result, consumers will be placed out of home at a
     greater cost to the state.

Additionally, the federal overtime rules also impact some regional center
service providers such as those that provide Supported Living Services
(SLS) and respite. Therefore, rates would need to be adjusted to address
the changes in the overtime rules.
Improve the Choices for Young Adults with Significant Medical Needs;
Remove 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) 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.

DHCS estimates that about 150 medically fragile children transition from
EPSDT to the NF/AH Waiver each year. Most of these children are regional
center consumers. Many of them experience a devastating reduction in
home nursing because adult rates are considerably lower than pediatric
rates (For example, compare a nursing facility B rate of $110,000 per year
for pediatrics to $56,000 adult rate); NF/AH waiver costs caps are even
lower with a rate of $48,180 resulting in a loss of 57% of her budget and
nursing hours; and IHSS nursing costs are not deducted from EPSDT but
are deducted from the NF/AH waiver budget.

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For regional center consumers, the issue is further complicated because
the Lanterman Act includes an entitlement to services which is uncapped.
Because the 2009 Amendments to the Lanterman Act required the use of
generic resources including Medi-Cal, regional centers require consumers
to seek in-home nursing through the NF/AH Waiver. If consumers are
placed on the NF/AH waiver, additional nursing services must be
purchased by the regional center with state-only dollars because
individuals can only be on one HCBS waiver (i.e., the NF/AH Waiver or DD
Waiver.)

To address the impact on services and the fiscal impact to the state, we
propose amending Welfare and Institutions Code section 4659(c) to
establish that the NF/AH Waiver shall not constitute a generic service if the
services offered to the consumer are not sufficient to meet the consumer's
need, which is defined as the level of service being received at age 21.
Early Start Restoration

Disability Rights California supports the restoration of Early Start eligibility
and funding to pre-2009 criteria and funding levels. We also support fully
funding the vital prevention resource and referral services provided through
contract by Family Resource Centers as part of California’s Prevention
Resource and Referral Program. Prior to 2009, Early Start provided
services to infants and toddlers under the age of 3 who were
“developmentally delayed,” had an “established risk,” or who were “at high
risk” of a developmental delay. In 2009, infants and toddlers with high risk
conditions were no longer eligible for the Early Start Program. The
Prevention Program was created within the regional center system to
provide intake services, assessment, case management, and referral to
generic services for children with high risk. In 2011, the Prevention
Program was phased out and the Prevention Resource and Referral
Services, implemented by the Family Resource Centers Network of
California, were created to provide outreach, information, and referral
services for “at-risk babies.”
The reductions and changes in eligibility criteria resulted in children who
had developmental delays without early treatments and adequate,
appropriate services. Evidence proves that children with developmental
delays that are served at an earlier age have fewer developmental delays
and require less costly services in the future. When the 2009 eligibility
criteria and reductions were implemented to the Early Start Program, DDS

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scored a savings of approximately 19 million dollars.5 We believe that
utilizing these dollars, in this time of economic recovery, to fully restore
Early Start and fund the prevention and referral services provided by
Family Resource Centers is an excellent investment in California’s children
and families.

5
    http://www.dds.ca.gov/Director/docs/2009BudgetReductionsSummary.pdf
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