July 12, 2016
Division of Medical Services
Program Development and Quality Assurance
P.O. Box 1437, Slot S295
Little Rock, AR 72203-1437
Re: Public Comments
Arkansas Request for Renewal of 1915(c) Home and Community-Based Services Waiver
To whom it may concern:
Disability Rights Arkansas, Inc. (DRA) is the federally authorized and funded nonprofit organization serving as the Protection & Advocacy System for individuals with disabilities in Arkansas. DRA is authorized to advocate for and protect human, civil, and legal rights of all Arkansans with disabilities consistent with federal and state law.
I am writing on behalf of DRA to submit this letter with our comments to the State’s proposed Arkansas Request for Renewal of 1915(c) Home and Community-Based Services Waiver (Arkansas HCBS Waiver Request or Request).
Participant Access and Eligibility
Appendix B-1, p. 28
The Arkansas HCBS Waiver Request includes information regarding eligibility that is contradictory to definitions in State statute and DDS policy.
The Request provides that “[b]oth persons with intellectual disability and developmental disability are recognized as target groups.” Appendix B-1, p. 28. It also provides that “[d}evelopmental disability diagnoses include Cerebral Palsy, Epilepsy, Autism, Down Syndrome, and Spina Bifida as categorically qualified diagnosis.” Id. The Request further provides that “[o]ther diagnoses will be considered if the condition causes the person to function as though they have an intellectual disability.” Id.
DRA has concerns with the State’s eligibility criteria with respect to those individuals with developmental disabilities who may not have one of the categorically qualified diagnoses. While representing that “other diagnoses will be considered other than the five categorically qualified diagnosis, DDS acknowledges that it interprets developmental disability to require that an individuals have both a categorically qualified diagnosis and significant adaptive behavior deficits related to this diagnosis.
Thus, DDS in fact has taken an overly restrictive view of eligibility, resulting in the exclusion from eligibility of those persons who have a developmental disability without a categorical qualifying disability. As a result, individuals with significant developmental disabilities not listed in the categorical list of five are excluded.
This restrictive interpretation and limitation by the State – that eligibility requires both a categorically qualifying diagnosis and significant adaptive behavior deficits – is inconsistent with Federal and State law.
The State asserts that in determining whether an individual has a developmental disability making him or her eligible for the waiver, it relies upon criteria and standards for ICF/IID facilities admission. However, according to federal regulations applying to ICF/IID facilities, a developmental disability includes a related condition defined as “[a]ny other condition, other than mental illness, found to be closely related to Intellectual Disability because this condition results in impairment of general intellectual functioning or adaptive behavior similar to that of mentally retarded persons, and requires treatment or services similar to those required for these persons.” 42 C.F.R. 435.1010 (emphasis added).
Arkansas Code Annotated, Section 20-48-101, which is cited in the Request, is consistent with these federal regulations. This statutory section includes a definition of developmental disabilities that includes not only the five categorically eligible diagnoses but also includes an “other” category for a condition that is closely related to an intellectual disability that results in “an impairment of general intellectual functioning or adaptive behavior similar to that of a person with [an intellectual disability] or requires treatment and services similar to that required for a person with [an intellectual disability].” (emphasis added).
Like Federal law, Arkansas state law does not require that an individual have both a categorically qualifying diagnoses and significant adaptive behavior deficits. DDS Policy also does not define eligibility criteria as narrowly as what is described and proposed in its Request. DDS Policy 1035 provides that an individual with an impairment in intellectual functioning or adaptive behavior can be eligible.
DRA recommends that the State correct its Request to ensure that the definition of developmental disability is consistent with Federal law and existing state law and policy.
Numbers of Individuals Served
Inadequate Increase in the Number of HCBS Waiver Slots
Appendix B-3, pp. 30-32
The Arkansas HCBS Waiver Request seeks an increase in the number of reserved HCBS Waiver slots for the Division of Children and Family Services (DCFS), for use by children in foster care, and an inadequate increase in the number of slots available for all others.
The Request proposes an increase in the amount of slots available for children in state foster care, immediately increasing that number from the current level of 100 slots to 200 slots.
The Request proposes a grossly inadequate increase of 100 slots for all others. This proposed increase takes place not immediately but over the course of 5 years. The Request proposes that the number of HCBS Waiver slots for persons who are not in state foster care will increase by 40 slots in the first 2 years of the waiver and by 20 slots each of the remaining 3 years of the waiver.
By increasing the number of reserved slots for foster children immediately, while phasing in the addition to the total number of other available slots, the State’s Request creates a system in which the number of slots available to all other persons is effectively lowered for the next five years.
Arkansas currently has approximately 2800 persons on the waiver waiting list. The waiting time for access to waiver services can be as long as ten years. At this time, persons on the waiting list have to be institutionalized to have any hope of accessing waiver services.
The proposed increase in slots for non-foster children is wholly inadequate to meet the needs of persons with developmental disabilities in Arkansas and represents a continuing failure by the State to comply with the integration mandate of the Americans with Disabilities Act and the United States Supreme Court decision in Olmstead. Olmstead v. LC, 527 U.S. 581 (1999).
DRA recommends that the State accept the Community First Choice Option and additional federal funds to increase the number of HCBS Waiver slots available to persons with developmental disabilities in Arkansas who desire to live in the community. In the alternative, DRA recommends that the State immediately increase the number of HCBS Waiver slots to cover all those who have been on the waiver waiting list for more than 5 years and increase the number of slots available annually by at least 200 slots for the next five years.
Summary of Services
Case Management
Need for Conflict Free Case Management
Appendix C-1, pp. 77-78
DRA has concerns about the Conflict Free Case Management provisions included in the Arkansas HCBS Waiver Request.
Arkansas proposes changes so that the same provider cannot provide both case management and direct care services for clients. In Arkansas, the majority of the individuals on the HCBS Waiver receive their direct care and case management services from the same provider.
There are only 66 providers that currently serve the 3,988 HCBS Waiver clients. The current rate for case management services paid by Arkansas to providers is $117.00 per client per month. HCBS providers have expressed concern that with the current rate structure, it will not be possible for small providers in rural areas of the State to comply with the requirement for conflict free case management and remain a financially viable program. Suggestions have been proposed to include firewalls in agencies to prevent conflicts in case management.
DRA understands the need for conflict free case management and the concerns of the HCBS providers. DRA is concerned that the imposition of the conflict free case management requirement without an increase in the rate provided by the State for case management services will result in the loss of providers and adequate case management in the state. However, given the challenges of ensuring that individuals have adequate programming and care along with serious inadequacies in the State’s oversight of HCBS settings, DRA supports a move toward conflict free case management as one necessary piece to ensure the welfare of individuals in those settings.
DRA recommends that the State be required to address the need for conflict free case management by increasing rates available for providers of case management services.
Participant Services
Services in Facilities Subject to 1616(e) of the Social Security Act
Restrictive View of Settings and Resident Rights
Appendix C-2, pp. 79-80
DRA has concerns about the State’s description of its plan regarding the delivery of HCBS settings in facilities subject to 1616(e) of the Social Security Act. The Request describes the characteristics of group homes and why they meet the HCBS standards in a way that focuses on the physical nature of the facilities and only state that the facilities “provide for privacy and easy access to resources and activities in the community” as opposed to actually stating that these facilities and characteristics meet the standards set by the HCBS rules. There is nothing about whether the setting is facilitating, not regulating, choice, autonomy, and community activities or other features of the rules. See Appendix C-2, pp. 79 –80.
In addition, there is other language in the description of these settings in the Request that calls into question the State’s understanding of the HCBS rules as the description says that residents are allowed free use of all space within the group home, but this is qualified with “reasonable house rules.” Id. House rules are one of the most common mechanisms used by settings to create an institutional environment in the name of keeping an orderly home. House rules often restrict privacy, the ability of an individual to come and go, use of telephone or other communications, when visitors may come to the home and how visits occur, etc. House rules can completely undermine any other community features of a facility and the state’s glancing reference to house rules is disturbing and shows a lack of understanding about the requirements of the HCBS rules. This is especially worrisome considering that some of the state’s group homes are large (those before 1995 can have 14 individuals).
DRA recommends that the State develop a description of group homes that places emphasis not on only physical characteristics of the homes, but also clearly describes the expectations of the homes in terms of community integration, choice and autonomy in a way that does not minimize the importance of those critical aspects of the use of group homes. DRA also recommends that the State eliminate the use of reasonable house rules as a focus and place the focus on ensuring that HCBS requirements are interpreted to give individuals the freedoms, choices and community access necessary to comply with those requirements.
Participant Services
Home and Community Based Services
Inadequacy of Transition Plan
Appendix C-5, pp. 91-93
DRA has concerns about the stated plan to comply with the HCB Settings requirements in 42 C.F.R. § 441.301(c)(4)-(5).
First, the summary in the Request describes site visits to group homes and residential settings, but does not indicate site visits for non-residential settings. In addition the site development review committee is only mentioned as relating to residential settings. The state seems to largely be ignoring non-residential settings, which are often some of the most segregated HCBS settings. DRA recommends that the State clarify in its application that non-residential settings are covered by the HCB Settings requirements and include those settings in its HCB Transition Plan and activities to achieve compliance with the requirements.
Second, according to the Request, the State is allowing providers to create their own improvement plan after receiving a compliance report and to submit updated policies to assure best practice, but there is no indication that the State would reject or require changes to an improvement plan. In addition, written policies may not be sufficient to actually change the culture of a setting or how an individual experiences a setting, which is the central factor to whether a setting meets the HCBS requirements. The description of the settings review subcommittee appears to have a role in providers who have to try to come into compliance, but the function and timing of this committee is somewhat confusing. Also, it is not clear who is on this subcommittee and whether stakeholders are at all involved in this process. DRA recommends that the State clarify the stakeholder composition and process, including the plan for ensuring compliance with the HCB Settings requirements.
Third, the Request promises a plan regarding individual transitions that is very general and relies upon terms like “sufficient information” and “reasonable notice” which may not mean the same thing to state employees as they do to individuals, families, and advocates. The State needs to be more specific and finish this plan soon, with involvement from stakeholders, to ensure that there is a process that will work and not endanger the community placements and connections of waiver participants. Although the State has convened stakeholder meetings, the meetings have not provided an adequate opportunity for stakeholders to have input into concerns about the State’s plan and steps toward compliance with the HCB Settings requirements. DRA recommends that the State commit to complete transparency in the development of its Transition Plan and ensure that the Plan is made available for public comment prior to its submission to CMS and that the State clarify the process including with definitions for terms open to subjective interpretation.
Fourth, in the Request, the State seems focused on changing the practices of settings as opposed to really looking at whether the settings the state currently offers within the HCBS waiver really meet the requirements and intent of the waiver. For example, in regards to settings that are presumed to have institutional qualities, the focus is on how these settings can change and modify individual plans to justify restrictions as opposed to questioning whether the settings really meet the characteristics of a HCB Setting and should be included in the program or whether those individuals should be using those settings. DRA recommends that the State use the HCB review and State Transition Plan processes to examine the settings being used for the program and make changes to the programs, as opposed to developing more restrictive individual plans designed to circumvent the HCB Settings requirements.
Fifth, the Request does not completely identify the types of settings that isolate HCB participants from the community and the State has failed to develop a comprehensive list of those settings types. Although it includes settings where multiple homes are proximate to one another or proximate to a public institution, the State does not pay attention to the relationship between residential and non-residential settings, and the role of private institutions and their effect on settings that are nearby or share functions with HCB funded settings. The state needs a broader approach to settings that isolate that looks at more than just the settings in the CMS guidance and those where HCB settings are clustered. Also, in the description of settings that isolate it mentions nothing about the characteristics of a setting, such as being isolated from the community or only serving people with disabilities that can create isolation and institutional qualities. DRA recommends that given that the State has some large (up to 14 residents) group homes, these homes and any similar facilities should receive a very close look to determine institutional qualities and should likely be presumed to be isolating.
Sixth, the Request provides for publishing the justification of the settings for heightened scrutiny in the newspaper. This indicates that the justifications that will be provided by the state are not going to be very informative and likely not complete. This approach does not give the public an adequate opportunity to comment and raises doubts about how much the State is really doing to find settings that isolate and the amount of information or justifications, including the types of evidence, that the State expects to have for the heightened scrutiny process. This should be more information than can fit in a newspaper notice. While the public notice in this format is valuable, DRA recommends telling the public about the list of settings, how to get more information (both via web and hard copy), and how to comment, to allow for more complete information such that the public can make meaningful comment about the state’s findings.
Response to Critical Events or Incidents
Clarification of Critical Incidents
Appendix G-1, pp. 113-114
The Arkansas HCBS Waiver Request contains inconsistent and contradictory information about types of incidents that are designated as critical and require follow- up by the State Division of Developmental Disabilities Services (DDS).
The Request provides a list of six incident types that are designated critical and require follow-up by DDS. The six items on this list are:
a. Suicidal behavior
b. Suspected abuse/neglect by a staff person
c. Location of client unknown for more than a two hour period
d. Use of restrictive interventions
e. Death
f. Arrest
See Appendix G-1(b), p. 113.
The list of critical incident types is immediately followed in the Request by a second list of incidents that must be reported but are not necessarily considered critical. Because they are not considered critical these items do not trigger an automatic review or investigation. The items on this second list are:
a. Death
b. Use of restrictive intervention
c. Suspected maltreatment or abuse
d. Injuries requiring medical care which may result in death or impairment
e. Attempted or threatened suicide
f. Arrest or commission of a crime
g. Situations where the client is missing for over two hours
h. Staff threatening a client
i. Medication errors made by staff which cause or have the potential to cause serious injury or illness
j. Any rights violation jeopardizing the health, safety, or quality of life of a program client
See Appendix G-1(b), pp. 113-114.
All six of the items on the “critical” incident list are repeated on the list of those that are not designated as critical. This is needlessly confusing and can lead to a lack of oversight into incidents that require review.
DRA recommends that the State revise the lists and have one list of incidents that are critical and another list of incidents that are not.
Safeguards Concerning Restraints and Restrictive Interventions
Adequacy of Behavior Management Expertise and Planning
Appendix G-2, p. 117
The Arkansas HCBS Waiver Request requires that behavior management plans put in place for waiver clients be written and supervised by “a qualified professional who is, at a minimum, a Qualified Developmental Disabilities Professional.” Qualified Developmental Disability Professional is a blanket term that does not necessarily include individuals with psychology training or backgrounds. DRA is aware of many instances in the State where individuals with developmental disabilities have lacked adequate behavior management and training in their HCBS placements, and this contributes to unsuccessful home and community based placement and leads to institutionalization or placement in jail.
DRA recommends that the State strengthen the requirements for the development, implementation and review of behavior management plans to require that a trained and licensed psychological professional and/or Board Certified Behavior Analyst be involved in the writing of any Behavior Management Plan and that training for direct care staff by licensed psychological professionals and/or Board Certified Behavior Analysts be provided.
Participant Rights
Appendix F, pp. 111-113
The State’s Request outlining a participant’s rights to a fair hearing raises some concerns about the due process afforded to beneficiaries of the Home and Community Based Services Waiver. The Request states “[w]hen the adverse action is case closure, services may continue during the appeal process if a fair hearing is requested and the service provider agrees to assume the risk of nonpayment for services delivered during this time.” (emphasis added)
The requirement for a service provider to agree to continue providing services during the pendency of an appeal places individuals at jeopardy of not receiving services they are entitled to and is in direct violation of the CMS regulations governing fair hearings. 42 C.F.R. § 431.230. For many individuals, this places them at risk of institutionalization and puts their health and safety in serious danger. The federal law already has a means for the State to recoup these costs for services should a beneficiary lose an appeal. Therefore, it is unacceptable for the State to force a beneficiary to rely on a service provider’s agreement to assume the risk in order to keep the benefits they are entitled to receive under Federal law when asserting their due process rights.
The Request also states that there is no additional dispute resolution process other than the appeals process. DDS Policy 1076, referenced in the Request, clearly requires an “administrative review” prior to the fair hearing request. See DDS Policy 1076(C)(6).
There is a related problem with the dispute resolution process referenced in the Request. This is a problem with the types of notices provided by DDS regarding appeal rights. DDS sends notices to waiver applicants or recipients advising them that they do not need to request an administrative review and may proceed directly to the fair hearing process. However, this is directly contrary to DDS Policy 1076(C)(6), which requires an administrative review prior to the fair hearing request. Thus, a waiver applicant or recipient could face dismissal of his or her request for a fair hearing if they relied upon the notice and skipped the administrative review to proceed directly to a fair hearing.
Furthermore, the Request outlines the grievance and complaint system utilized by the State. DRA believes a system must be in place to investigate concerns regarding a service provider. However, DRA does not believe that the system outlined in the Request can be effective without an increase in staffing for the investigative unit. At present, the investigative unit is dangerously understaffed with only one investigator and one investigator supervisor to handle over 100 different provider agencies. This unit has expressed an inability to adequately perform its functions and to ensure the safety of individuals in the State’s Home and Community Based Provider settings.
An individual’s right to receive services in the community is of the utmost importance to DRA. The providers must be held to high standards and be carefully monitored to ensure that a participant is not only able to live in the community but to also be safe and provided with the services to which they are entitled while doing so. In order for that to happen, DDS must have adequate staffing necessary to monitor the providers for compliance with standards on a regular basis and to also be able to investigate and address complaints as they arise.
DRA recommends that the State revise the Participant Rights section of the Request to align it with federal law regarding a beneficiary’s access to services during the pendency of the appeal. The State should also make changes to either the Request or the State policy regarding appeals to ensure that both are consistent with each other and should implement a mechanism to ensure that both are carried out with fidelity. In addition, DRA recommends that DDS consider providing simple, plain language guidance to explain the appeals process to an ordinary consumer. Finally, DRA recommends that the State adequately staff its investigative and licensure units in order to hold providers accountable and to ensure the safety of and services provided to participants.
Conclusion
Strengthening and improving access to HCBS services must be a priority in Arkansas to ensure that the State is not only serving but adequately serving individuals with developmental disabilities who desire to live in the community as opposed to institutions.
DRA appreciates your attention to our comments and requests that the State consider and implement these recommendations in the State’s Request for an HCBS Waiver.
Sincerely,
Debra Poulin
Legal Director
Cc: Tom Masseau, Executive Director, Disability Rights Arkansas, Inc.
400 West Capitol, Suite 1200, Little Rock AR 72201
501.296.1775 V/TTY ◘ 800.482.1174 ◘ Fax 501.296.1779
www.DisabilityRightsAR.org