DRI Comments on Home and Community Based Services Transition Plan

Comments of DisAbility Rights Idaho
Idaho Medicaid Transition Plan for Compliance with CMS/HCBS Community Integration Regulations
DisAbility Rights Idaho (DRI) is the Protection and Advocacy Agency for the State of Idaho under 42 USC §§ 15041-15045, 42 U.S.C.A. §§ 10801-10807, 10821-10827, and 29 USC § 794e. We are deeply concerned with the implementation of these Federal regulations and with the rights of people with disabilities generally.
Insuring that Idahoans with disabilities have full access to their communities, and control over their lives and homes, is a high priority for DRI. We believe that the approach to this transition should be much broader than the review of current state facility rules. Many Medicaid rules, practices and payment rates have a profound effect on whether people receiving HCBS services can achieve community integration and self determination within their own homes.
Recommendation 1.      The comment process being used by the Department of Health and Welfare (IDHW) is very technical and generally inaccessible to many consumers and stakeholders. The series of webinars have consisted of a recitation of the departments conclusions that certain rules either do or do not have provisions which relate to the new federal regulations. Without finding and reviewing the rules involved, commenters cannot determine whether they agree with the findings or not. The plan consists only of statements to address in some unspecified way the areas of current rules identified as “gaps”. Consumers, family members and even some providers cannot make meaningful comments on such a plan. DRI concurs with the recommendation of the Idaho Council on Developmental Disabilities (ICDD) on improving the comment process.
Recommendation 2.      The transition plan should contain more than a statement of identified gaps in Idaho Medicaid rules, and the process should include more than a review of the rules’ text. Determining whether Idaho Medicaid complies with the community integration mandate must explore actual conditions and experience of participants in HCBS settings. It must also review rate structures to determine whether they encourage or prevent integrated settings and practices, and how other factors such as cost sharing may impede access to community activities compared to people who are not HCBS recipients.
Recommendation 3.      CMS has not required states to submit a transition plan on how the state conducts “Person Centered Planning” (PCP). However, the PCP process is a key part of the community integration process and the new CMS regulations include changes to the language describing requirements for PCP. It will not be possible for Idaho to comply with the HCBS rules without proper implementation of changes to PCP processes. In order to be in compliance with the CMS regulations Idaho will need to change the person centered planning process in several HCBS programs. This issue is not addressed in the plan.
Recommendation 4.      Idaho Medicaid imposes limits on the cost of services for each individual in HCBS waivers and in Adult DD services under section 1915(i) of the Social Security Act. These limits are called individual budgets. The budgets set upper limits on the total cost of services for each individual. The budgets are determined differently in each waiver. However, in every case the budgets are set in a process which is prior to, and independent of, the person centered planning process. CMS rules address individual budgets only in the context of self directed services, but the budgets have the potential to affect each person’s ability to participate in community integrated activities. People whose budgets force them to access only center based or group services do not have the ability to choose individual or community integrated activities to the same degree as people who are not dependent on HCBS services. This issue is not addressed by the transition plan.
Recommendation 5.      Reimbursement rates for services can create unintended barriers to community integration.  “Blended rates” for Section 1915(i) services which pay the same rate for individual and group services creates a strong incentive to provide services in groups or in segregated centers. Center based and group services can have the effect of limiting individual choices and preventing participation in community integrated settings. For some individuals, the combination of individual budgets and rate incentives can effectively require them to spend all or most of their day in segregated, or disability group activities. The same effect can be seen in HCBS DD waiver models when individual budget limitations force a person to utilize mostly or only group based services. The transition plan does not address these issues.
Recommendation 6.      Medicaid Transportation can have a huge affect on a person’s ability to make personal choices about the services they receive. The current contract with AMR and its implementation restrict a participant’s choice of provider and the place where the service is received by limiting transportation to the closest Medicaid provider site to offer the service. This may pose another hidden barrier to participant choice and community integration, in violation of the CMS regulations. The issue is not addressed in the plan.
Recommendation 7.      Recent activities of the ICDD in surveying people receiving HCBS/DD services have revealed widespread practices by Medicaid providers which restrict individual choice and freedom. These include restrictions on access to food, and allowing participants to receive phone calls or respond to surveys. Even when current Medicaid rules might prohibit the restrictions, such practices persist and may be commonplace. The transition plan should include a plan to investigate the prevalence of such practices and the development of proper oversight and enforcement. (see also comments by ICDD)
Recommendation 8.      The CMS rules allow person centered planning processes to authorize exceptions to the new rules in settings which are provider owned or controlled, such as Certified Family Homes and Residential and Assisted Living facilities. The rules do not allow for a similar exception in non-provider owned settings such as Supported Living or My Voice My Choice. Idaho has made good use of these community integrated models for people with significant disabilities and significant behavioral issues. In Idaho’s system these HCBS models serve participants who could not be served well in congregate care settings. The success of these placements sometimes depends on the ability of the provider to restrict certain activities, and choices, when those choices pose a significant threat to the safety of the participant, their roommates, or members of the public. The effect of these CMS rules could be to force these participants into less integrated and less appropriate congregate care facilities. Idaho needs to explore the creation of one or more care models which can recreate the advantageous community integration of the current supported living model, while allowing for legitimate safety based concerns. These settings could include allowing provider leasing or ownership of a residence in a 2 or 3 bed community residence which can restrict unsafe activities, or application for a “Community Safety” waiver model under a non-HCBS authority such as section 1115 of the Social Security Act. Safeguards must be developed to insure that these models are not used to restrict the choices of people who do not pose a legitimate and significant safety risk.
Recommendation 9.      Cost sharing provisions of the HCBS/A&D waiver can also seriously impair the choices of participants as expressed in this comment we received from one of our clients:
Under current law the home that I live in and the lift equipped van I own are not considered a resource for Medicaid. The problem with Idaho’s personal needs allowance (PNA) is that it does not allow a participant to use his own income to repair, maintain, insure or even sometimes use the home or vehicle.

I live in my own home but do not drive and require a caregiver to drive me to church, the movies, my son’s band concert, and other activities in the greater community. I was told by a previous home healthcare provider that these type caregiver hours were not included in my UAI. I was required to private pay for these caregiver hours. I think I should have the same rights as a Medicaid participant living in a certified family home or a residential assisted living facility.

I don’t believe I’m allowed control over how my resources are spent to the same extent that a non-HCBS person living in the greater community has over their resources.

I feel like I am being institutionalized in my own home.

Some of these recommendations will also apply to non-residential settings and service design should consider both residential and non-residential services.
Submitted by DisAbility Rights Idaho
Contact: James R. Baugh, Executive Director
4477 Emerald St., Ste. B-100   Boise, ID 83706
Ph: 208-336-5353,  e-mail:  jbaugh@disabilityrightsidaho.org

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