First, if this document represents “guidance” which DMAS intends to be able to reference as an authority, it should be appropriately formatted and legitimate authorship should be indicated.  While there are a few examples of “guidance” documents posted which lack an indication of the above, most (even those produced by DBHDS) do show some indication of origin.

Second, while we may agree in principle with the premise of the presumption of competence, §64.2-2000 clearly defines an individual for whom guardianship has been established as an incapacitated person:

“Incapacitated person" means an adult who has been found by a court to be incapable of receiving and evaluating information effectively or responding to people, events, or environments to such an extent that the individual lacks the capacity to (i) meet the essential requirements for his health, care, safety, or therapeutic needs without the assistance or protection of a guardian or (ii) manage property or financial affairs or provide for his support or for the support of his legal dependents without the assistance or protection of a conservator. A finding that the individual displays poor judgment alone shall not be considered sufficient evidence that the individual is an incapacitated person within the meaning of this definition.” 

A provider who chooses to disregard the direction or decisions of a legally appointed guardian does so at their peril and significant risk of liability. 

We can agree that if only one individual living in a group setting has specific dietary needs and physician’s orders for certain restrictions, that arrangements need to be made to protect the freedoms and flexibilities for others. 

We can not agree that in the example of an individual who leaves the residence unaccompanied and who lacks the necessary skills for self protection that the provider should document the behavior over a period of time without taking immediate steps to try to minimize the opportunity for the behavior to occur.  The conflict here is between the expectation that the individual has the right to place themselves at risk and the counter expectation that the provider must, in all cases, prevent injury or death. 

Specifically, if Jane has a history of wandering away and lacks the skill necessary to protect herself, to identify her address or someone to call, to lack understanding about the danger of traffic or how to seek shelter, etc. the provider, upon admission, needs to have some steps in place to try to prevent that behavior.  In addition, each event of “wandering” would minimally be reportable as a Level II incident of “missing” and if injury occurred would also be reportable as a Level II ER visit and/or serious injury. 

Each of those reports requires a root cause analysis and specific mitigation strategies to be implemented immediately.  A pattern of that behavior would certainly result in further investigation either by the Office of Human Rights, the Incident Management Unit or both and be labeled a “care concern” and failure to act to protect Jane would lead to either a corrective action plan or a reportable allegation of neglect or both. 

The example for “Tom” is equally naïve – verbally counseling an individual on the dangers of having a visitor who is trying to sell drugs to the individual or his housemates or engage in any other illegal behavior, without notifying the police and taking active steps to bar that individual from the property is, I suspect, easily categorized as gross negligence.

Adding that Tom cannot have visits from his “friends” who have been observed attempting to deal drugs is hardly sufficient!   I cannot imagine the type of explanation which would be offered in the root cause analysis for the ER visit for the use of a controlled substance when the provider was well aware of the risk and had documented same!

I also want to note that the recommendation for the individual with Prader-Willi does NOT follow the traditionally accepted protocols and should not be included here.  As Prader-Willi is a genetic disorder and not a behavioral pattern, repeated weighing is generally not encouraged.  Experience also tells us that encouraging other residents to keep food in their rooms is an invitation to injury as an individual with Prader-Willi lacks the ability to resist consumption of food and will, either by force or manipulation, seek to attain what is available.

If this document is finalized in its current format:

• DBHDS should produce a list specific exceptions to the current regulatory requirements for the HCBS additional criteria to mitigate the conflict for providers, and

• Support Coordinators should provide individuals and families with a copy of the guidance to clearly illustrate the limitations placed on providers

1. The comment period for this guidance was not sent out via the provider listserve to notify providers of the opportunity for comment.  Why?
2. There is nothing on this guidance to indicate any sort of regulatory authority to provide this guidance - an identification of authorship, or a supervisor who was reviewed this document, and it is not on letterhead.  It also does not indicate what existing regulation(s) the guidance is in reference to. 
3. “Further, all individuals receiving services in settings that fall under the settings requirements are presumed competent to experience all of the benefits of community living that each of us enjoy, including the capacity to express their preferences and choice in the setting, AND expect that their choices will be honored.”  Perhaps this statement was in regards to the small, everyday decisions we all make, like what to eat and what to wear for example, but that isn’t how the statement reads.  Should an individual have a court appointed Legal Guardian with Full Guardianship or with specific criteria in a Limited Guardianship that includes certain criteria they have decision making abilities for, this is a legal process that providers cannot overrule.  And yes, this provider is well aware of code §64.2-2019 E, which says that a guardian shall consider the expressed desires and values of the Person.  But this provider would also point to §64.2-2000, where you will find the definition of “Guardian” – one who “is responsible for the personal affairs of an incapacitated person, including responsibility for making decisions regarding the person's support, care, health, safety, habilitation, education, therapeutic treatment, and, if not inconsistent with an order of involuntary admission, residence”. Sometimes the guardian says, “No, the Person cannot go to Las Vegas with their sponsored placement family”.  Maybe the guardian wants a restriction that the Person doesn’t agree with but is necessary for the Person’s health and safety, or that the provider has reservations about because a less restrictive method hasn’t been attempted yet.  Providers can and do advocate for a Person’s stated wants and needs, and uses regulatory requirements guiding rights and restrictions as a way to educate the Guardian. However, should a guardian want a right restricted, for example limits placed on cell phone use, outside agencies such as Social Services will support the Legal Guardian, and open the agency up to significant liability if the agency does not comply with the guardian’s wishes. 

Guidance on balancing these sometimes contradictory requirements would be welcome.

4. While this provider agrees in general with the examples for modification within the guidance in terms of the outcomes being measured for success, this provider does take significant issue with the examples in the specific individualized assessed need.
5. Documenting “the number and times Jane has wandered away from the home and been found walking in the street or another unsafe location” is reportable in CHRIS for each occurrence, at a minimum for Licensing.  It could also warrant a Human Rights investigation for negligence on the part of the staff on duty at the time of the occurrence.  Continued reoccurrence would likely require a risk assessment according to Licensing standards, and again, a Human Rights investigation, and this isn’t even considering APS involvement with the issue.  Again, here we have a great example of contradictory requirements – a Person’s right to dignity of risk, in direct conflict with a provider’s most strictly regulated requirement, to protect a Person from harm and risk of death or injury.
6. Documenting “the number of times Tom’s potentially dangerous visitors tried to sell drugs to him and his Housemates” – We are mandated to report this to law enforcement, in addition to multiple other entities, within specific time frames mandated by other regulations, not track it for data.
7. This provider is aware that this guidance is in regards to HCBS Rights only.  But ignoring the requirements of other regulatory agencies like the Office of Licensing (OL) and the Office of Human Rights (OHR) only leads to confusion on the part of all providers who must comply with what would seemingly be competing “guidance”. 
8. For ‘John’, this provider agrees that if one person’s access to food needs to be limited for health/safety, another person’s doesn’t need to be, and this needs to be accounted for by the provider.  This provider also agrees with the comment from another respondent in regards to ‘John’, that “that the recommendation for the individual with Prader-Willi does NOT follow the traditionally accepted protocols and should not be included here.  As Prader-Willi is a genetic disorder and not a behavioral pattern, repeated weighing is generally not encouraged.  Experience also tells us that encouraging other residents to keep food in their rooms is an invitation to injury as an individual with Prader-Willi lacks the ability to resist consumption of food and will, either by force or manipulation, seek to attain what is available.”  For ‘Tom’, this provider agrees that limiting these specific ‘friends’ does not warrant limits on ALL of Tom’s visitors.  These examples could be considered appropriate guidance for these issues, and is also echoed by training and guidance from other regulatory agencies. 
9. The guidance is not clear for #6, Individual’s Informed Consent, “the support coordinator and provider must fully inform the person of the assessed need for the modification and how the modification will be implemented. The individual must agree to the Modification, as evidenced by their signature on the plan”. The guidance lists only the individual here, and makes no mention of substitute decision makers.  In a perfect world, every individual would be able to provide informed consent for a plan of support or a modification of a right. In the examples you provided, John may vocally and repeatedly disagree with having limits on his food intake, and may refuse to provide consent for the modification.  Tom says “It’s my right to have visitors” and refuses to consent.  Jane may sign the consent form, but Jane loves to sign her name, and will sign any paper given to her, with no real understanding of what has been repeatedly explained in regards to what she is signing.  We do support individuals who can make informed decisions without assistance from a substitute decision maker.  But, the majority of those we support at our agency cannot make informed decisions on their own, and have a Legal Guardian or other legally appointed decision maker, or less frequently an Authorized Representative, to provide this consent.  Not being clear here that if a Person cannot offer informed consent, then the substitute decision maker’s consent should also be required – as guidance from OL and OHR do – leads to confusion for providers.  [See item 3 of this provider’s comments, above]

Again, this provider is aware that this guidance is ONLY addressing HCBS Rights modifications.  But in ignoring the regulatory requirements of other agencies who also oversee services in guidance like this is to the detriment of providers and those we support, who are impacted by the confusion caused by misguided guidance.

Unfortunately, the present guidance document fails to appreciate the complex issues surrounding court appointed legal guardians and their responsibility for ensuring the health, safety and wellbeing of individuals who have a history of dangerous behavior that has put themselves and others at risk of harm. It would be helpful if the document can provide guidance for providers on how to include legal guardians in the discussion of rights restrictions. There are no legal protections for a provider who challenges a legal guardian using HCBS rights as an argument. In other words, if an individual is harmed or injured as a result of their behavior (or injures/harms others) and the provider chose not to follow the guardian's stated recommendations, this guidance document provides no protection for the provider. The hyperbolic language of this document ("ONLY", "cannot be modified at any time") suggests that providers should challenge or test a legal guardian's decision making authority. Unfortunately, the present guidance document fails to appreciate the legal ramifications this will have on providers. Moreover, a longer-term consequence of this might be that providers may choose not to provide supports/services to individuals with a history of dangerous behaviors.

Second, the present guidance document fails to acknowledge and incorporate historical information from other professionals / providers as evidence for a necessary restriction. What if a medical doctor orders a specific restriction for health and safety reasons? Will a provider still need to document the evidence of risk in progress notes, data collection, etc. "before restricting them in any way"? What if a psychiatrist or another mental health professional recommends the removal of guns / knives from the home because of previous suicide attempts? Should a provider still collect their own evidence/data for 6-months before following the other professional's recommendations? The guidance document fails to appreciate both a multi-disciplinary approach and the use of evidence from other providers when making decisions about appropriate care. Rarely is a provider alone in making all the decisions for the individual's safety and wellbeing. What should providers do with data or evidence from previous service providers that show a history of previous attempts and/or history of failed interventions that resulted in injury to the individual/others or discharge from services. Currently, there is no guidance on how a provider can use this valuable historical information from other providers to help maintain the health and safety of the individual (e.g., to implement a life saving restriction upon admission/starting services).

Third, there are no references to empirically supported or evidence-based practices. Some of the examples given in the guidance document suggest practices that go against current empirically validated treatment recommendations for individuals diagnosed with Prader-Willi syndrome and substance use/abused disorders (e.g., Duis, J., van Wattum, P. J., Scheimann, A., Salehi, P., Brokamp, E., Fairbrother, L., Childers, A., Shelton, A. R., Bingham, N. C., Shoemaker, A. H., & Miller, J. L. (2019). A multidisciplinary approach to the clinical management of Prader-Willi syndrome. Molecular genetics & genomic medicine, 7(3), e514. https://doi.org/10.1002/mgg3.514 ; or McGovern, M. P., & Carroll, K. M. (2003). Evidence-based practices for substance use disorders. The Psychiatric clinics of North America, 26(4), 991–1010. https://doi.org/10.1016/s0193-953x(03)00073-x ). The present guidance document can be improved if it balances an individual's rights and freedoms with their right to effective, evidence-based treatment. 

I hope the above comments are helpful to the agency / author. 

Public comments about the 'HCBS Modification Process' Guidance Document

There are numerous legal and clinical implications surrounding restricting the rights of individuals. Which legal and clinical authorities or expertise were consulted or involved in developing this “guidance”? There are no references or authoritative basis for any of the examples, which are very prescriptive and contradictory to the other responsibilities and requirements with which providers have to comply, as well as industry best practices.

Please clearly identify the author, audience, and regulatory basis of this “guidance” document.

The contradictions within the guidance are as troubling as the gross omissions of other competing authorities, such as legal guardianship, facility accreditation criteria, and licensing requirements. The document fails to provide clarification of any regulation or decision-support for providers who need to navigate complex, real-world issues as representatives of the Virginia waiver system. Instead, it increases both provider and DMAS vulnerabilities to non-compliance with the DOJ Settlement and violations of state law and federal human rights.

This guidance should be announced properly, specifically to providers, to not only allow useful public comment and provider feedback, but also to comply with procedures for establishing guidance about how regulations that are part of state law should be interpreted and implemented. Why wasn’t it announced in the provider listserv? Will public comments and provider feedback be incorporated before it is established as official guidance, and if so, how exactly?

On behalf of all of the individuals DMAS serves, please seek out expert consultation and carefully consider provider feedback as part of the proper process for developing official guidance that is helpful instead of riddled with high risk.

First-Thank you for presuming competence of each individual receiving services from HCBS providers. That is valuable and as an occupational therapist and therapeutic consultation provider who strongly believes in the right of every individual to express their voice and choice, I must acknowledge that.

However, there is so much more work needed on this document to account for individuals who come to various settings with established plans of care to address specific health and safety needs. As an occupational therapist, I examine the impact of environment and task demands on individual performance, therefore in the given example of the person with Prader-Willi Syndrome, alarms may be a good first option, but there should not be a time when alarms are not in place given that individual’s diagnosis and pre-disposition to food intake that puts them at high risk for other health complications, you must start with a safe option. For Jane the individual who tends to wander, door alarms, and some type of safety tracking device may be indicated at the time of transition based on previous strategies that were successful. Why would should a provider be put at risk for a individual to be injured unnecessarily. This “guidance” is not taking into account the situations that those of us who have worked in these settings experienced on a daily basis. As other commenters have noted some of these suggestions are not inline with best practices for the conditions you referenced & fail to insure the individual’s health & wellness at baseline.

 To provide an example from my personal life experience with a parent with a disability—Bed rails were classified as a restraint in hospitals and therefore were no longer allowed to be up on both sides due to increased fall risk and even death in patients. However, my father was a quadriplegic with no controlled motor movement below the neck and a history of spastic seizures that made him a significant fall risk in a narrow hospital bed. This was highly documented. However due to policies created that listed the above rules for hospitals and skilled nursing facilities, each time he went to one we had to worry if he would fall out of bed with a fall mat and sometimes a half railing. He was able to advocate for his needs with his family by his side, but even then there was pushback because of the policies that were in place to prevent restraint that actually caused him physical harm. 

Furthermore, as currently presented this guidance is failing provide safe solutions at baseline and allow for supported decision making and the role of the legal guardian in the decision making process. How do those conflicts get resolved when the legal guardian disagrees with the individual? What is the role of the provider in those circumstances?

The goal of providing supports to individual’s with disabilities is to provide the right level of support at the right time. I recognize the need to be as least restrictive as possible, but give the unique set of circumstances of each individual, you must account for past experiences yo be taken into consideration for modifications  from the beginning rather than allowing an individual to be put in harm’s way before taking action. Any guidance from an agency should account for complex situations and support provider decision making rather than making it more burdensome and confusing. 

I would be repeating what every other comment submitted before me, so I will just add one more comment.....

Modifications to the HCBS requirements could, and should, be processed and approved through the interdisciplinary team process, and documented in the PCP.

Assuming competence is a "feel good" guidance, but not necessarily practical to a provider, especially if a guardian is already in place.

The examples given are contradictory, at best, with best practices and with licensing and human rights standards.

Other reviewers have made detailed comments on the specific problems within the document so I will not repeat the excellent points VNPP and Family Sharing have made.

The document should not be posted as an official Guidance Document. It could be used as a handout in a training on the topic with open discussion about some of what the document proposes and reality in interacting with the layers of reviewers within Licensing, Human Rights, HSAG, QMR, APS and the court system. There are multiple citations that would be given to providers if they followed what is recommended within some of the examples. APS would likely ask us to move individuals from the home and/or open cases to ensure individuals are safe.

There is some excellent information in here, but the document is riddled with problems that requires a re-write and review from multiple agencies.

The state system (agencies) that oversee provision of services, are not on the same page when it comes to the interpretation of the information within this document. DMAS, DBHDS, APS/DSS and others are not in agreement on all of the contents. Some of those agencies are not even in agreement within their own departments. Please do not post this as a Guidance Document.

At enCircle, we are joining with others who have already posted concerns. The crux of the problem is this: it is not possible for a provider to be in compliance with Department of Behavioral Health and Developmental Services (DBHDS) Office of Licensing (OL), Office of Human Rights (OHR)and HCBS regulations the way they are currently written and interpreted by the Department of Medical Assistance Services (DMAS). If we fail to comply with DBHDS regulations we will lose our license, and if we fail to comply with HCBS regulations we will lose our funding. Following HCBS regulations as interpreted also creates a legal risk for providers, opening us to charges of negligence from those we support and their families and guardians.

• DBHDS defines Group Home or Community Residential service as a congregate service providing 24-hour supervision in a community-based home having eight or fewer residents. Services include supervision, supports, counseling, and training in activities of daily living for individuals whose individualized services plan identifies the need for the specific types of services available in this setting. A person who requires the level of support required for these settings would not be eligible to receive the Community Living Waiver if they were able to live based on the HCBS standards outlined.
• DBHDS prioritizes safety. To meet OL/OHR requirements, providers don’t necessarily presume a person is automatically competent to assess and understand risk. The individual must be assessed, and measures taken to keep the person safe, first and foremost. Once safety is assured, the provider works toward educating the person so that the modifications/restrictions necessary to preserve the person’s safety are no longer needed.
• HCBS prioritizes dignity of risk, presuming each individual is competent to make all decisions for himself or herself. While we appreciate the thought behind this presumption of competence, it allows safety to be compromised. It means that providers can no longer consider historical data about someone when they start a new service. This puts providers in the ethical conflict of turning a blind eye to the information we have gathered as part of assessment for services or through direct observation. Ignoring information could put the individual and others at risk and opens providers to liability issues for ignoring safety risks and allowing them to recur. It would likely also lead to the provider being cited for neglect.

Private Providers have been placed in a very difficult position; it would be much better if all the regulatory bodies had communicated prior to rolling out HCBS services and citing providers. We request that implementation be paused immediately until OL, OHR and HCBS can construct regulations that support each party and support the legal and ethical responsibilities of private providers.

Thank you for providing an opportunity for review and submission of public comment related to this document. Upon review of this document, I too echo the same comments that others have detailed quite thoroughly.

This document appears to be based upon interpretation that misaligns with the other components that exist within the Provider Community, in providing day to day services to individuals across the Commonwealth. The concern with this type of approach is that interpretation creates inconsistency. It has been noted by other commenters that the various departments existing within this service area approach this area with their own interpretation. Having all necessary parties at the same table in discussing this topic is needed, in order to progress forward.

One key area that is of concern relates to the notation of use of the safety restrictions form for the part V to capture HCBS modifications. The use of this forms has always remained within the catchment of human right restrictions that has been deemed necessary to ensure safety. The form references criteria found within these specific regulations. It does not appear appropriate to group potential modifications related to HCBS within this same form. Additionally, separation of the terms restrictions versus modifications is also a key area that needs focus and attention. Any modifications should be able to be reflected within the PCISP to include the Part V and not require an additional form to be completed. 

The Provider Community truly wants to adhere to the necessary HCBS requirements but the way in which this process is unfolding is resulting in confusion and difficulty. This document needs significant revisions and attention. 

While the reference material outlines very narrowed examples to guide provider agencies in the implementation of HCBS modifications, it does not take into account, like numerous previous commenters noted, the conflicting and stringent regulations currently in place in the state of Virginia.

While this commenter values the focus of person-centeredness, self-determination, dignity of risk, and community connectedness, this document makes an assumption that provider agencies assume no risk associated with such recommendations.  As a matter of personal experience that is just not true.  All provider agencies in the state of Virginia are held accountable by Legal Guardianship requests, Licensing Regulations, Human Rights Regulations, and DMAS Waiver Regulations to prevent and mitigate risk daily or face the potential payback of funds or revocation of the agency license.  

In addition, this document was not developed through a collaborative approach with people receiving HCBS services, Legal Guardians, other stakeholders, or the agency providers that deliver the service.  Actually, there is no indication given within this document as to who developed this or who to direct questions to, other than the CRC that may or may not be familiar with the other regulatory requirements impacting service delivery.  Therefore, when provider agencies are left to respond to licensing reports or other punitive actions, there is no ability to obtain support with those responses.

If the developer of this document seeks to create a collaborative document that could be developed to truly offer support/guidance to provider agencies, this commenter would be supportive of that.  One recommendation would be to allow documentation of said modifications to be completed within the ISP as opposed to an additional document.  This commenter welcomes collaborative efforts that streamline the administrative burden on provider agencies so that the focus can be put back on supporting the people receiving HCBS services to gain independence and have the quality of life one desires.