Sarah Steenhausen
Dear Sarah:
Protection and Advocacy, Inc. (PAI), a non-profit advocacy agency mandated to advance the human and legal rights of persons with disabilities, has worked closely for many years with Californians with disabilities (including seniors) who wish to avoid or leave long term care institutions. Waivers are potentially an important tool for those consumers, yet the shortcomings of the current nursing facility waivers limit their usefulness. We are submitting this document as PAI’s formal input to the Waiver Stakeholder process.
First, in light of the importance of the waivers, PAI requests that the California Health and Human Services Agency make the stakeholder process fully accessible to consumers by:
§ Holding additional stakeholder meetings in different areas of the State; and
§ Providing support to consumers to facilitate their attendance and full participation.
While the NF A/H Waiver application submitted to
Changes critical to making the Waivers more effective include:
1.
Increase the Number of
Slots: Expand
the NF A/B Waiver to reflect the number of people in
Recommendation: PAI strongly recommends that the State use available sources of information to project the need for Waiver slots and use such information to expand the Waiver commensurate with need in the State. The HCBS Waiver for individuals with developmental disabilities has approximately 70,000 slots for a population of 200,000 consumers. In comparison, a NF A/B Waiver with 1240 slots for a population of at least 100,000 nursing facility residents is woefully inadequate. Expanding the Waiver by tiny increments, as is done now, rather than a comprehensive assessment of projected need is simply wrong.
Rather, the State should extrapolate from one or more of at least five sources of reliable, current data;
§
the
§ the UCLA Money Follows the Person project;
§
§
These sources clearly show that the current Waiver
capacity cannot meet actual need. For example,
Moreover, the State has applied for a federal Money
Follows the Person grant, which contemplates providing home and community based
services to as many as 2000 people over the next five years. The ability of the State to do so is
contingent on the availability of Waiver services for these individuals. Thus,
for
2.
Realistic
Recommendation: PAI recommends that the State appropriate funds for the NF A/B Waiver commensurate with the cost of nursing facility placement, and that such appropriation increase annually at a rate equal to any increases in facility rates.
3. Flexible Eligibility: Eligibility for the current Waivers is determined by a rigid “level of care” determination. This means that people who have specific needs that are not considered in the regulations defining each level of care (NF-A, NF-B, Subacute, etc.) are either denied Waiver services, or are placed at a lower level of care than they need to purchase a sufficient amount of services.
Recommendation: The Waivers need to allow for flexible eligibility determinations so that such individuals are not forced into institutions unnecessarily, or left at home with inadequate services.
4.
Aggregate
Recommendation: PAI recommends that the State apply an aggregate cost-cap to the NF/AH Waiver to enable individuals whose costs exceed the cost for their designated level of care to benefit from HCBS Waiver services, rather than remain unnecessarily in institutions.
5. Allow for Local Administration: Currently, the Nursing Facility A/B, Subacute, and Acute Care Waivers are administered by In-Home Operations at the Department of Health Services. One of the reasons given for the low number of slots is that IHO’s staff is too small to administer a larger Waiver. Some other Waivers, like the MSSP and AIDS Waivers, are administered at the local level by community organizations and/or non-profit agencies. This allows for better contact with clients, local prioritization for slots, and program structure tailored specifically to the needs of particular communities.
Recommendation: PAI recommends that the State allow for local administration of some or all Waiver slots to allow for better efficiency, local prioritization of slots, and tailoring of administration to meet local needs.
6.
Recommendation: PAI recommends that the State work with interested advocates and legislators to resolve this serious and unnecessary administrative barrier to seamless receipt of WPCS and IHSS.
7.
TBI Waiver: The State of
Recommendation: The State should apply for a new HCBS Waiver to address the needs of people with TBI, as many other states have done.
8. Improved Quality Assurance: Consumers have expressed frustration about the level and type of oversight to the NF A/B and Subacute Waivers. In particular, they believe that the quality assurance component of the Waivers should be centered around consumers’ satisfaction with their quality of life, their ability to hire and retain providers of their choice, and the amount of burden and stress related to coordination of their care. This is an important component to evaluate the success of any program and to determine where changes and improvements may need to be made.
Recommendation: PAI recommends that the State develop and implement a quality assurance component to the Waivers, with the input of consumers and advocates, that is built on prior and current successful measures of life quality—both in and outside of California. Such a system should not be limited to level of care determinations and health and safety concerns, but should also include direct input from consumers, families, and supports about the individual’s quality of life and satisfaction with his or her Waiver services. Evaluators must also be trained specifically on self-determination and other life quality factors.
9. Single Point of Entry: Under the current system, individuals can easily be admitted to nursing facilities within a matter of days, but the process for getting on a Waiver may take months, or even years. Other states have created a single point of entry system (sometimes called No Wrong Door), where people are evaluated for both Waivers and nursing facilities at the same time, and people are offered a choice. To do this, the State would need to allow for retroactive approval of Treatment Authorization Requests (TARs) for Waiver services, just as it does for nursing facility placement. Other states’ programs have had a lot of success in helping people avoid placement in a nursing facility by approving and providing Waiver services just as quickly as institutional placement.
Recommendation: PAI recommends that the State implement a single point of entry system, and implement Welfare and Institutions Code section 14132.99(c), by developing a mechanism by which individuals who are referred for nursing facility placement will be informed about, and assessed for Waiver services in an expedited manner (3 days). Individuals who are determined eligible for and desire Waiver services will have their applications processed in an expedited fashion in order to avoid unnecessary nursing facility placement.
10.
Need to Coordinate NF
Waiver
Recommendation: There needs to be better coordination among these systems so that people who have a combination of disabilities can get the services they need from multiple systems working together.
11.
Consumer-Friendly
Materials
Recommendation: The State should create written information,
both on its website and in print, that explains the process for getting on the
Waiver, what services are available, how to find service providers, and
consumers’ rights. DHS should also do
outreach to individuals in institutions and hospitals to make sure that they
know about HCBS Waivers and have an opportunity to apply for them. All
information should be available in accessible formats and in other languages widely
used in
Thank you for consideration of these comments. We look forward to Thursday’s meeting and to further collaboration in this important effort.
Sincerely,
Elissa Gershon
Staff Attorney
F:\DOCS\ELISSA\Waivers\Stakeholder Meeting Position Statement 11-14-06.doc