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.