Proposed Federal Rules, Home and Community Based Services/Medicaid Waivers

Public Input Provided in 2011

Input submitted to the Centers for Medicare and Medicaid Services

June 13, 2011

Centers for Medicare & Medicaid Services
Department of Health and Human Services
Attention: CMS-2296-P
P.O. Box 8016
Baltimore, MD 21244-1850

To Whom It May Concern:

The Texas Council for Developmental Disabilities is a 27-member, Governor-appointed board dedicated to creating systems change so that all people with disabilities can live independent lives in the community. Thank you for the opportunity to provide comments on the Advanced Notice of Proposed Rule Making CMS-2296-P and commend the Centers for Medicare and Medicaid Services (CMS) for taking such a strong position on issues TCDD believes are essential elements to supporting individuals’ in their home and community.

The Texas Council for Developmental Disabilities believes that individuals with disabilities should have access to opportunities and the supports needed to be included in community life, have interdependent relationships, live in homes and communities, and make contributions to their families, communities, the state, and the nation. CMS identified standards for community living of –optimizing participant independence and community integration, promoting initiative and choice in daily living, and facilitating full access to community services. We believe these standards reflect the values and goals that many individuals with developmental disabilities, along with their families and advocates, have struggled to achieve for over 40 years. Home and Community Based Waiver funding is the primary source of public support for individuals with developmental disabilities and families in achieving these goals. The proposed rule in CMS-2296-P supports and reinforces the standards for community living articulated by CMS and ensures that HCBS Waivers continue to be dedicated to furthering these values and goals.

Home and Community Based Settings

Of particular interest to TCDD is the discussion of what is or is not a home or community setting. CMS has recently taken strong positions on what settings are home and community in order to qualify for the use of HCBS funding, and that continues in this regulation. By definitively stating what environments are not a home or community setting, CMS will help ensure that the intent behind HCBS funds is fulfilled by providing services in the most integrated settings. Being upfront that building smaller homes on the grounds of institutions and creating disability specific housing complexes or communities are not considered home and community will help end troubling attempts to use HCBS funds to create these inherently non-integrated settings to live and/or receive services.

Residential Services

The requirements set forth in the rule address not only the location and physical characteristics of the setting, but also those elements of service delivery that are more institutional in nature and those that enhance integration and self-direction. This mixture of the physical setting and qualities of service delivery is critical because of the many different options for living arrangements that are emerging and the variations of the characteristics and qualities that could either provide a new innovative model that enhances community integration or a new form of segregation. TCDD strongly supports the location and physical characteristics of a home and community based setting, the qualities of service delivery for home and community based settings, and the qualities of an institutional setting, as set forth in the proposed rule. These requirements will provide important guidance and parameters to ensure that HCBS Waiver funds are not used for settings that segregate individuals with developmental disabilities, either by the physical design or the congregate and provider directed form of service delivery.

TCDD suggests that additional language be included in the rule to more fully capture the intent and discussion conveyed in CMS-2296-P.

  • In (iv), which provides the qualities of service delivery for home and community based settings, we recommend adding “support exercising full rights and responsibilities as community citizens” and “individualized services and supports.”
  • In (B), we recommend identifying some of the core qualities that would make a setting institutional in nature. Specifically, we recommend the following sentence be added: “Such qualities would include, but not be limited to regimented meal and sleep time, limitations on residents to those with a diagnosis or disability, limitations on visitors, lack of privacy, limitations on times and frequencies of access to community activities, and any other attributes that segregate the individual or limit an individual’s ability to engage freely in the community.”
  • In (A), we recommend adding “segregated” in front of “housing complex designed expressly around an individual’s diagnosis or disability.” The importance of excluding such housing complexes as home and community based settings is that they will segregate individuals with disabilities from the community if they only or predominantly serve individuals with disabilities and are designed solely around meeting such individuals’ needs. However, there may be housing complexes for multiple types of populations that have been designed to enhance integration both among the populations in the complexes and within the local communities and include services to support individuals with particular diagnoses or disabilities. If such a setting provides an appropriate level and type of integration of individuals with and without disabilities, meets the stipulated qualities of a home and community based setting, and does not include the qualities of an institution setting, this setting may be a viable living arrangement option that enhances the success of community integration and should not be excluded.
  • In (A) and (B), the proposed rule provides for the Secretary’s determination of whether a setting is home and community based. Additional parameters for such a determination may be beneficial. We recommend adding after “as determined by the Secretary”, the following:, “consistent with the characteristics, qualities and intent set forth in this rule.”

Other Waiver Services

In addition, one of the most important parts of this discussion of home and community is that the regulation rightly states that HCBS waiver funds are used for more than just where a person lives. Waivers fund a number of other services that should also be performed in the most integrated setting possible such as employment services and other day services.

TCDD believes that people with disabilities have the right to job training, employment at competitive wages, and career growth as lifelong learners. The Council further believes that employment opportunities should be open to people with disabilities in the community job market without discrimination or segregation. Through employment, people with disabilities gain an important point of entry into their community, a sense of being valued, of being “part of,” as well as wages and job benefits. With these tangible and intangible benefits of employment, people with disabilities secure greater independence and freedom from public support service systems. Sheltered employment and day habilitation services perpetuate segregation and marginalize citizens with disabilities. TCDD does not believe that sheltered employment and congregate day habilitation meet the intent of the HCBS Waiver program, and we strongly support CMS’ proposed regulations to prohibit the use of HCBS funding for any services in congregate, segregated settings.

Person-Centered Planning

The new Person-Centered Planning provisions in the proposed rule recognize that optimizing participant independence and promoting initiative and choice in daily living requires the involvement of the individual in developing his/her plan for community living. Minimum Person-Centered Planning requirements are provided for ensuring not only involvement of the individual but the intent that the individual is driving the process. TCDD supports the proposed requirement for a person-centered functional assessment which will ensure that an objective assessment determines a participant’s level of need. Although Texas does currently offer a person-directed planning process in its comprehensive waiver for people with intellectual and developmental disabilities, TCDD supports the development of minimum core requirements for the process. The proposed regulations would also further promote individual control, responsibility and self direction. TCDD strongly supports the proposed rules for Person-Centered Planning. We also support additional language to ensure that States that have person-centered planning processes which offer more individual control and responsibility in the planning than set forth in the rule would not be limited to the proposed provisions, but rather CMS’ proposed guidelines be established as a minimum that states would be encouraged to exceed.

The recognition that plans for a person with a disability should not be made without the involvement of the person has been increasing in recent years, and CMS recognizes this important trend in this regulation by requiring the use of person centered planning when developing the uses for HCBS waiver funds. The importance of having this concept fully recognized in the federal regulation cannot be understated and will hopefully lead to its use in a number of other settings.

Combining Target Populations

TCDD supports the option to combine different populations into one waiver but recommends that CMS further address the issue of combining target populations that have different annual cost caps and service arrays. TCDD believes that the development of any HCBS waiver that serves multiple target populations should ensure that individual cost caps are not set lower or higher than what would be available to an individual in a single-population waiver. Currently, population-specific comprehensive waivers offer specialized services tailored to meet the unique needs of people with significant disabilities. TCDD has concerns that waivers serving combined target populations would dilute the availability of specialized services.

However, we believe that CMS rules can address these concerns by issuing clear guidance regarding the determination of cost neutrality and functional eligibility criteria. The end result should be that people who would otherwise require intermediate care facility services are not subject to cost neutrality and functional eligibility criteria that apply to nursing facility services and vice versa. If not thoroughly addressed, the issue of cost TCDD believes that people with disabilities have the right to job training, employment at competitive wages, and career growth as lifelong learners. The Council further believes that employment opportunities should be open to people with disabilities in the community job market without discrimination or segregation. Through employment, people with disabilities gain an important point of entry into their community, a sense of being valued, of being “part of,” as well as wages and job benefits. With these tangible and intangible benefits of employment, people with disabilities secure greater independence and freedom from public support service systems. Sheltered employment and day habilitation services perpetuate segregation and marginalize citizens with disabilities. TCDD does not believe that sheltered employment and congregate day habilitation meet the intent of the HCBS Waiver program, and we strongly support CMS’ proposed regulations to prohibit the use of HCBS funding for any services in congregate, segregated settings.

Person-Centered Planning

The new Person-Centered Planning provisions in the proposed rule recognize that optimizing participant independence and promoting initiative and choice in daily living requires the involvement of the individual in developing his/her plan for community living. Minimum Person-Centered Planning requirements are provided for ensuring not only involvement of the individual but the intent that the individual is driving the process. TCDD supports the proposed requirement for a person-centered functional assessment which will ensure that an objective assessment determines a participant’s level of need. Although Texas does currently offer a person-directed planning process in its comprehensive waiver for people with intellectual and developmental disabilities, TCDD supports the development of minimum core requirements for the process. The proposed regulations would also further promote individual control, responsibility and self direction. TCDD strongly supports the proposed rules for Person-Centered Planning. We also support additional language to ensure that States that have person-centered planning processes which offer more individual control and responsibility in the planning than set forth in the rule would not be limited to the proposed provisions, but rather CMS’ proposed guidelines be established as a minimum that states would be encouraged to exceed.

The recognition that plans for a person with a disability should not be made without the involvement of the person has been increasing in recent years, and CMS recognizes this important trend in this regulation by requiring the use of person centered planning when developing the uses for HCBS waiver funds. The importance of having this concept fully recognized in the federal regulation cannot be understated and will hopefully lead to its use in a number of other settings.

Combining Target Populations

TCDD supports the option to combine different populations into one waiver but recommends that CMS further address the issue of combining target populations that have different annual cost caps and service arrays. TCDD believes that the development of any HCBS waiver that serves multiple target populations should ensure that individual cost caps are not set lower or higher than what would be available to an individual in a single-population waiver. Currently, population-specific comprehensive waivers offer specialized services tailored to meet the unique needs of people with significant disabilities. TCDD has concerns that waivers serving combined target populations would dilute the availability of specialized services.

However, we believe that CMS rules can address these concerns by issuing clear guidance regarding the determination of cost neutrality and functional eligibility criteria. The end result should be that people who would otherwise require intermediate care facility services are not subject to cost neutrality and functional eligibility criteria that apply to nursing facility services and vice versa. If not thoroughly addressed, the issue of cost neutrality of a combined waiver could result in people with significant needs being unable to access needed home and community-based services if their services are “high-cost.”

Furthermore, the scope of services must be adequate to meet the needs of individuals with significant developmental disabilities who may need more and different services than what are traditionally offered in waivers for people with physical disabilities or the elderly. To be effective, waivers serving combined target populations must not result in less access to comprehensive services. Current federal regulations prohibit states from limiting access to all services within a waiver. CMS will need to clarify states’ ability to restrict access to waiver services within a combined waiver so that individuals can continue to receive the specialized services they need in a combined waiver. CMS rules should take these considerations into account and require states to provide an adequate array of services for all target populations being served in one waiver.

Strategies to Ensure Compliance and Amendments to Waivers

TCDD supports providing options to ensure compliance in addition to termination or nonrenewal. The proposed strategies of a moratorium on waiver enrollments or withholding a portion of the federal payment for waiver services or for administration of waiver services are appropriate coupled with interim sanctions that send a message that compliance needs to be achieved, without jeopardizing the health and safety of the waiver participants. We would suggest that any strategies that affect waiver services be utilized only as a last resort.

Current budgetary situations are resulting in programmatic changes to Texas’ long term services and supports. These have included different interpretations of allowable services and reductions in provider reimbursement rates for certain services. Citing concerns over health and safety of participants, services provided in congregate settings (such as residential group homes and congregate day habilitation) have been exempted from rate reductions and service limitations. This may incentivize providers to push more costly and more restrictive group home living options, which is counter the intent of home and community-based services. TCDD strongly encourages CMS to ensure states are complying with the intent of the HCBS Waiver program by not approving limits to services that are integral to maintaining an individual in the least restrictive setting in addition to maintaining their health and safety.

TCDD strongly supports a requirement that waiver amendments be vetted with impacted stakeholders and believes that CMS has made some important improvements in the administration of the HCBS waivers through this regulation. By not allowing a new waiver or substantive changes in an already existing waiver to take effect until the waiver has been approved by CMS will help ensure that the waivers fulfill the mandate of the HCBS waiver program. In addition, the new transparency requirements will help interested stakeholders know and comment on changes being considered and makes the process much more open to the public as a whole.

Again, CMS should be commended for the many important improvements to the HCBS waiver program in these regulations. TCDD applauds CMS for issuing such strong regulations that reinforce the values of optimizing participant independence and community integration, promoting initiative and choice in daily living, and facilitating full access to community services.

Respectfully submitted,

Roger A. Webb
Executive Director