Event Details
Panelists:
Rebecca Schupp, Chief, Long-Term Care Division, California Department of Health Care Services Jim Knight, Assistant Deputy Director, California Department of Developmental Services Amy Westling, Director of Policy, Association of Regional Center Agencies Aaron Carruthers, Executive Director, State Council on Developmental Disabilities Javier Zaldivar, Executive Director, San Andreas Regional Center Eric Zigman, Executive Director, Golden Gate Regional Center Moderator: Jill Escher, president, Autism Society San Francisco Bay Area Date: Friday, May 20 Video archive: Will be linked after the event at sfautismsociety.org Questions? [email protected]. |
Video Archive of the HCBS Forum
Introduction: https://vimeo.com/167911295
Person-Centered Planning: https://vimeo.com/167921511 Day and Work Programs: https://vimeo.com/167932274 Residential Settings: https://vimeo.com/167966244 Heightened Scrutiny: https://vimeo.com/168046324 Q&A: https://vimeo.com/168059626 Forum on Medicaid Home and Community Based Services in California
On May 20, 2016 SFASA was pleased to host a forum on HCBS in California. This event was intended to help inform families, persons with developmental disabilities, and service providers about newly issued Home and Community Based Services (HCBS) rules issued by the Centers for Medicaid Services that may affect long-term care options for the growing population of adults with autism and related developmental disabilities.
Due to limited seating, and to reach the widest audience, this event was livestreamed. Given the limited amount of time the discussion will focus on the following issues (DETAILED FORMAT IS AT BOTTOM OF THIS PAGE): • How is "person-centered planning" different from the current IPP process under the new HCBS rules. What new options must be offered to consumers? • How will day programs and employment programs need to adjust their operations to better encompass person-centered outcomes? • Will developmentally disabled adults receiving HCBS-funded support services be excluded from certain residential settings? • What is "heightened scrutiny" of nonresidential and residential settings? Who decides if it's warranted? Who conducts it? How is it conducted? What is the appeal process? Background Information on the New HCBS Rules
Medicaid is the largest provider of long-term care services and supports for people with developmental disabilities. Payments are made to states, not individuals, and support about half of the costs of services. They cover services and programs in both residential and nonresidential settings, but not brick and mortar housing or rent.
HCBS is a Medicaid program that helps fund services for people living in the community instead of in institutions. People are entitled to Intermediate Care Facility (ICF) care under Medicaid, however, there are currently over 300,000 people with disabilities on waiting lists for HCBS long-term services across the country. California’s Lanterman Act means technically no wait list, but in many regions there are scant viable options. ICF/DDs in California are seldom appropriate for adults with autism. HCBS funding under the 1915(c) waiver is only available to individuals who qualify for an institutional level of care. Services covered include day programs, aide supports, home health aides, case management. Families, nonprofits and investors need to take action to address the booming need to expand adult autism/DD services and housing, but progress is now largely at a standstill. There is concern that the rules, although "person-centered" and "outcome-oriented" appear to be imposing undue constraints on viable out-of-home placements, and center-based day services, for example. California is now creating its HCBS implementation plan—where are we headed? What program and residential settings are permissible and not? And why? What can we as a community do to ensure the broadest array of supported residential and nonresidential choices for our autistic and DD adult children? And with the greatest cost efficiencies? The new rules make HCBS funding contingent on a new array of requirements, though there are differences between actual regulations themselves, which are set forth in the Federal Register, and various subregulatory guidances issued afterward. There is strong concern that a procedural barrier called “heightened scrutiny” threatens some programs and housing with loss of services funding. California has not yet submitted its plan to CMS for approval. The purpose of the Forum is, while acknowledging that California has yet to draft its plan, to convey how the new rules may both positively or negatively impact plans and prospects for California's growing population of adults with developmental disabilities. The new rules can be found at 42 CFR Part 430 et seq. |
Preliminary Format for May 20 HCBS Forum
[Format and questions are subject to change. All time signatures are approximate]
9:30 Welcome and introductions
9:45-10:15 Person-centered planning
(1) PROCEDURE. How is person-centered planning under HCBS different from California’s IPP process under Lanterman? How is the “independent assessment of functional need” performed, and by whom, and what are the measures? How is this different from today’s process? Who decides who serves on the PCP team? How is a member removed if desired by the client? Under the rules, the client will lead the PCP process to the extent possible, but where not possible, under the law, a conservator is authorized under state law to represent the individual in directing the PCP process. Are there exceptions to that? (9:45-9:55)
(2) OPTIONS. How does the consumer obtain information about all the relevant options to make “informed choices and decisions” as per HCBS requirements? What if the choices are narrow, inappropriate or not person-centered? What is the client’s recourse? (9:55-10)
(3) VIABILITY. What are the limits of “person-centeredness”: If a client of a day program wants to hike or cook several hours a day, would the RC to mandated to fund a 1:1 to enable this activity? Where do we draw the line between client desires and what is logistically and financially feasible? (10-10.05)
(4) APPEAL. What is the recourse if there is not a consensus and/or a party wishes to challenge an element of the IPP? (10.05-10.10)
(5) STANDARD ACROSS ALL RC’s? For creating PCP’s will RCs apply common procedures and standards or will each RC have different ones? How will training occur on a statewide basis, and by whom? (10.10-10.15)
10:15-10:45 Nonresidential day and work programs
(1) NONCONFORMING. Please provide examples of types of day and work programs that do not meet the new HCBS rules. Please explain what adjustments need to be made to bring those programs into compliance. When is a congregate or disability-specific day program presumed isolating? If so, why? What is the dividing line between congregate programs that “isolate” and those that do not? (10.15-10.25)
(2) EMPLOYMENT OPTIONS. A consumer must be given “opportunities to seek employment and work in competitive integrated settings.” We hope many adults with autism and DD can find competitive jobs, but the reality is that this opportunity is infrequently available to many in our population. Can a person receiving HCBS funded services engage in volunteer work or work for less than minimum wage, if that meets with that person’s capacity and desire? (10.25-10.30)
(3) SUPPORTING FULL ACCESS FROM ANY SETTING. Access to the community is a function of planning, aide assistance, transportation, training, and programming, and not physical aspects of a particular building. How can we “support full access” to the community where the price may be beyond the RC budget? (10.30-10.35)
(4) SEVERE BEHAVIOR ADULTS. Will supportive and strongly staffed programs that serve clients who require 1:1 care due to severe behaviors be de-funded if they have congregate or disability-specific elements? Give examples of day and work options for those with severe behaviors under the new rules. If a consumer is given notice to leave a program due to behaviors or other issues, and there are no alternative programs available due to lack of vendors or waitlists, who has the obligation to design, staff and fund the PCP? (10.35-10.40)
(5) IF HCBS SAYS NO BUT LANTERMAN SAYS YES. Where HCBS does not fund services for some reason, but they are still required under Lanterman, is it not the RCs obligation to fund the appropriate services even without a federal match, except with respect to Self-Determination? (10.40-10.45)
10:45-11:30 Residential settings
(1) NON-HCBS LANDLORDS. What is the legal authority, if any, to impose "heightened scrutiny" on a property not receiving HCBS funding, such a multiplex residence that provides no services? What, if any, authority does the state have to "bring into compliance" or "remediate" such a private residential property where the owners and managers have no relationship to any HCBS program? Such settings have no control, per HCBS rules, over “privacy, dignity and respect,” or “coercion and restraint” or “individual initiative, autonomy, and independence in making life choices,” or “with whom to interact,” or “facilitating individual choice regarding services and supports, and who provides them.” (10.45-10.55)
(2) EXAMPLES. Please provide examples of types of residential settings, both HCBS-recipients, and non-HCBS-recipients, that you think will be “presumed institutional” and subject to heightened scrutiny. (10.55-11)
(3) NUMBERS. Would the state create a bright-line rule regarding how many persons with DD are “too many” in a multiplex residence or in a particular measurable area where property owners receive no HCBS funds? Or for licensed group homes? (11-11.05)
(4) MODIFICATION OF RULES. The HCBS rules offer modifiability to allow for flexibility for those with specialized needs. The rules specify that for provider-owned settings, modifications are allowed if supported by a specific assessed need and justified in the PCP. Modifiable aspects include: privacy aspects, lockable doors, choice of roommates, freedom to furnish and decorate, freedom to control schedules activities, access to food at any time, visitors of their choosing at any time. Since these modifications are afforded based on individualized needs, would the state prevent creation of programs that permitted these modifications?
Also, doesn't the ADA require modifications of the HCBS rules where “reasonable accommodations” are warranted? (11.05-11.10)
(5) STATE-PROVIDED HOUSING. Where parents are no longer able to provide care, and the consumer has no resources or property, what HCBS-compliant housing options can the RCs provide where the DD adult does not own a home or have the ability to pay rent, and needs 24/7 care? Aren’t ICF’s—funded pursuant to a different Medicaid program and not HCBS— an alternative for adults with autism who have no viable housing options under HCBS? (11.10-11.15)
(6) PRIVATE UNIT. Under the new rules, the state has the obligation to offer each consumer the “option for a private unit in a residential setting.” What does that mean where RCs generally do not pay for housing in the first place? (11.15-11.20)
(7) DISCRIMINATION. Would the state specifically prohibit expenditures of HCBS funds to housing for developmentally disabled adults who choose to reside near other DD adults? Do the same rules apply to veterans, the mentally ill, homeless, or seniors?
Do HCBS provisions contravene the Lanterman Act,which prohibits discrimination against persons with developmental disabilities, per Welf & Inst Code sec 4502: “Persons with developmental disabilities have the same legal rights and responsibilities guaranteed all other individuals by the United States Constitution and laws of the State of California. No otherwise qualified person by reason of having a developmental disability shall be excluded from participation in, be denied the benefits of, or be subjected to discrimination under any program or activity, which receives public funds.” Sec. 4502.1 adds: “The rights of individuals with developmental disabilities to make choices in their own lives requires that all public or private agencies receiving state funds for the purpose of serving individuals with developmental disabilities, including but not limited to regional centers, shall respect the choices made by consumers or where appropriate, their parents, legal guardian, or conservator.” (11.20-11.25)
(8) KEEPING EVERYONE SAFE. Many consumers exhibit significant aggression and require 2 trained staff, and often 3, in order to keep all safe at all times, including community members. Do we have sufficient funding to serve these high-needs adults in the community safely? What happens if there’s a crisis and someone is harmed? Also, will the state educate the public and law enforcement about the greater range of individuals with DD that they will be sharing community settings with, including individuals with disruptive behaviors? (11.25-11.30)
11:30-noon Heightened scrutiny and appeal
(1) TRIGGER. What triggers heightened scrutiny—a finding that a setting has the effect of isolating, and is therefore presumed to have “the qualities of an institution”? Who makes that decision, the RC, DDS, DHCS, or CMS? What information must be presented to trigger a review? How does the state or CMS decide if something warrants review? Will there be written findings of fact? (11.30-11.35)
(2) CMS DISCRETION. What is the legal standard for review? Can you characterize the scope of discretion at CMS, so we know review is not arbitrary and capricious? (11.35-11.40)
(3) PROCEDURE. What specific questions will be asked during heightened scrutiny? How will an assessment be conducted? How long will it take? Is the process transparent (ie, procedural due process) or does it take place behind closed doors? Who conducts the review, and how are those people appointed? Will there by written findings of fact and conclusions of law, as with a normal administrative proceeding? (11.40-11.50)
(4) APPEAL. What are the avenues for appeal and recourse if CMS withholds funding because it considers a congregate program to be “institutional”? (11.50-11.55)
Closing: Timeline ahead and the specific opportunities for public input. (11.55-noon)
Noon-12:30 Open Q&A
9:30 Welcome and introductions
9:45-10:15 Person-centered planning
(1) PROCEDURE. How is person-centered planning under HCBS different from California’s IPP process under Lanterman? How is the “independent assessment of functional need” performed, and by whom, and what are the measures? How is this different from today’s process? Who decides who serves on the PCP team? How is a member removed if desired by the client? Under the rules, the client will lead the PCP process to the extent possible, but where not possible, under the law, a conservator is authorized under state law to represent the individual in directing the PCP process. Are there exceptions to that? (9:45-9:55)
(2) OPTIONS. How does the consumer obtain information about all the relevant options to make “informed choices and decisions” as per HCBS requirements? What if the choices are narrow, inappropriate or not person-centered? What is the client’s recourse? (9:55-10)
(3) VIABILITY. What are the limits of “person-centeredness”: If a client of a day program wants to hike or cook several hours a day, would the RC to mandated to fund a 1:1 to enable this activity? Where do we draw the line between client desires and what is logistically and financially feasible? (10-10.05)
(4) APPEAL. What is the recourse if there is not a consensus and/or a party wishes to challenge an element of the IPP? (10.05-10.10)
(5) STANDARD ACROSS ALL RC’s? For creating PCP’s will RCs apply common procedures and standards or will each RC have different ones? How will training occur on a statewide basis, and by whom? (10.10-10.15)
10:15-10:45 Nonresidential day and work programs
(1) NONCONFORMING. Please provide examples of types of day and work programs that do not meet the new HCBS rules. Please explain what adjustments need to be made to bring those programs into compliance. When is a congregate or disability-specific day program presumed isolating? If so, why? What is the dividing line between congregate programs that “isolate” and those that do not? (10.15-10.25)
(2) EMPLOYMENT OPTIONS. A consumer must be given “opportunities to seek employment and work in competitive integrated settings.” We hope many adults with autism and DD can find competitive jobs, but the reality is that this opportunity is infrequently available to many in our population. Can a person receiving HCBS funded services engage in volunteer work or work for less than minimum wage, if that meets with that person’s capacity and desire? (10.25-10.30)
(3) SUPPORTING FULL ACCESS FROM ANY SETTING. Access to the community is a function of planning, aide assistance, transportation, training, and programming, and not physical aspects of a particular building. How can we “support full access” to the community where the price may be beyond the RC budget? (10.30-10.35)
(4) SEVERE BEHAVIOR ADULTS. Will supportive and strongly staffed programs that serve clients who require 1:1 care due to severe behaviors be de-funded if they have congregate or disability-specific elements? Give examples of day and work options for those with severe behaviors under the new rules. If a consumer is given notice to leave a program due to behaviors or other issues, and there are no alternative programs available due to lack of vendors or waitlists, who has the obligation to design, staff and fund the PCP? (10.35-10.40)
(5) IF HCBS SAYS NO BUT LANTERMAN SAYS YES. Where HCBS does not fund services for some reason, but they are still required under Lanterman, is it not the RCs obligation to fund the appropriate services even without a federal match, except with respect to Self-Determination? (10.40-10.45)
10:45-11:30 Residential settings
(1) NON-HCBS LANDLORDS. What is the legal authority, if any, to impose "heightened scrutiny" on a property not receiving HCBS funding, such a multiplex residence that provides no services? What, if any, authority does the state have to "bring into compliance" or "remediate" such a private residential property where the owners and managers have no relationship to any HCBS program? Such settings have no control, per HCBS rules, over “privacy, dignity and respect,” or “coercion and restraint” or “individual initiative, autonomy, and independence in making life choices,” or “with whom to interact,” or “facilitating individual choice regarding services and supports, and who provides them.” (10.45-10.55)
(2) EXAMPLES. Please provide examples of types of residential settings, both HCBS-recipients, and non-HCBS-recipients, that you think will be “presumed institutional” and subject to heightened scrutiny. (10.55-11)
(3) NUMBERS. Would the state create a bright-line rule regarding how many persons with DD are “too many” in a multiplex residence or in a particular measurable area where property owners receive no HCBS funds? Or for licensed group homes? (11-11.05)
(4) MODIFICATION OF RULES. The HCBS rules offer modifiability to allow for flexibility for those with specialized needs. The rules specify that for provider-owned settings, modifications are allowed if supported by a specific assessed need and justified in the PCP. Modifiable aspects include: privacy aspects, lockable doors, choice of roommates, freedom to furnish and decorate, freedom to control schedules activities, access to food at any time, visitors of their choosing at any time. Since these modifications are afforded based on individualized needs, would the state prevent creation of programs that permitted these modifications?
Also, doesn't the ADA require modifications of the HCBS rules where “reasonable accommodations” are warranted? (11.05-11.10)
(5) STATE-PROVIDED HOUSING. Where parents are no longer able to provide care, and the consumer has no resources or property, what HCBS-compliant housing options can the RCs provide where the DD adult does not own a home or have the ability to pay rent, and needs 24/7 care? Aren’t ICF’s—funded pursuant to a different Medicaid program and not HCBS— an alternative for adults with autism who have no viable housing options under HCBS? (11.10-11.15)
(6) PRIVATE UNIT. Under the new rules, the state has the obligation to offer each consumer the “option for a private unit in a residential setting.” What does that mean where RCs generally do not pay for housing in the first place? (11.15-11.20)
(7) DISCRIMINATION. Would the state specifically prohibit expenditures of HCBS funds to housing for developmentally disabled adults who choose to reside near other DD adults? Do the same rules apply to veterans, the mentally ill, homeless, or seniors?
Do HCBS provisions contravene the Lanterman Act,which prohibits discrimination against persons with developmental disabilities, per Welf & Inst Code sec 4502: “Persons with developmental disabilities have the same legal rights and responsibilities guaranteed all other individuals by the United States Constitution and laws of the State of California. No otherwise qualified person by reason of having a developmental disability shall be excluded from participation in, be denied the benefits of, or be subjected to discrimination under any program or activity, which receives public funds.” Sec. 4502.1 adds: “The rights of individuals with developmental disabilities to make choices in their own lives requires that all public or private agencies receiving state funds for the purpose of serving individuals with developmental disabilities, including but not limited to regional centers, shall respect the choices made by consumers or where appropriate, their parents, legal guardian, or conservator.” (11.20-11.25)
(8) KEEPING EVERYONE SAFE. Many consumers exhibit significant aggression and require 2 trained staff, and often 3, in order to keep all safe at all times, including community members. Do we have sufficient funding to serve these high-needs adults in the community safely? What happens if there’s a crisis and someone is harmed? Also, will the state educate the public and law enforcement about the greater range of individuals with DD that they will be sharing community settings with, including individuals with disruptive behaviors? (11.25-11.30)
11:30-noon Heightened scrutiny and appeal
(1) TRIGGER. What triggers heightened scrutiny—a finding that a setting has the effect of isolating, and is therefore presumed to have “the qualities of an institution”? Who makes that decision, the RC, DDS, DHCS, or CMS? What information must be presented to trigger a review? How does the state or CMS decide if something warrants review? Will there be written findings of fact? (11.30-11.35)
(2) CMS DISCRETION. What is the legal standard for review? Can you characterize the scope of discretion at CMS, so we know review is not arbitrary and capricious? (11.35-11.40)
(3) PROCEDURE. What specific questions will be asked during heightened scrutiny? How will an assessment be conducted? How long will it take? Is the process transparent (ie, procedural due process) or does it take place behind closed doors? Who conducts the review, and how are those people appointed? Will there by written findings of fact and conclusions of law, as with a normal administrative proceeding? (11.40-11.50)
(4) APPEAL. What are the avenues for appeal and recourse if CMS withholds funding because it considers a congregate program to be “institutional”? (11.50-11.55)
Closing: Timeline ahead and the specific opportunities for public input. (11.55-noon)
Noon-12:30 Open Q&A