The licensing regulations have consistently prioritized risk management over the individual’s right to dignity of risk. While the CMS HCBS rights were an important counterweight to this tendency, the state continues to implement/propose regulations that impinge upon the human/HCBS rights of individuals and their perception of service quality with little balancing in their continuing drive to institutionalize the home. Specific concerns in this draft proposal:

1. 106 – 680 – F – we fully support the change of the maximum water temperature to 120 and suggest this be done through an emergency regulation or guidance document to allow the change to take effect immediately; it is long overdue. However, the inclusion of the sentence “precautions shall be taken to prevent scalding from running water” should be removed or significantly amended. This inclusion requires the development of blanket provisions that cover all individuals under all circumstances in the organization which would reduce the individualization of services and potentially infringe on the free access/use rights of many individuals where additional precautions are not required. Rather the inclusion of additional scalding precautions for an individual should be made based on an individual assessment of need, included in an approved plan of supports and monitored through the serious incident process.
2. 106 – 710 – traffic pattern – ridiculous requirement for single-family home (which sponsored placement and small group homes qualify as) what kind of traffic pattern plan do they expect for a 30 foot driveway or parking area adjacent to a home –this provision should be limited to high flow traffic areas subject to congestion and homes excluded.
3. 106 – 730 – C & D – lighting – C- requires lighting in halls to be “continuous at night” – while this may be appropriate for large/long institutional hallways with numerous doors it is wholly inappropriate for small individual homes. I agree with an earlier post and can provide additional examples where this requirement would directly infringe on the sleeping preferences (and thus HCBS rights) of individuals in the home. The proposed regulation is also overly restrictive for the home and the intent of the regulation can be accomplished through less restrictive means. For example, we have a small nightlight in the longer hall, overflow illumination from the common area and a smoke detector with an emergency light that provides additional illumination for exit areas during an emergency evacuation which effectively resolve any concern without infringing on the rights of anyone or running up the electric bill – another unfunded mandate. D is unclear but the inclusion of the need for “protection against… intruders”, appears to assume that these lights will be left on all night as well, again running up the electric bill – another unfunded mandate. Additionally, if the requirement is interpreted this way it would actually increase the risk of intruders for our homes which are located in rural areas – rural people are frugal (we have to be we don’t get NOVA rates) and typically only leave the outside lights on when they are out of the home to illuminate their return and turn them off in the evening unless they are expecting visitors; but only rarely leave them on all night when they forget. As such having exterior lighting on in the middle of the night is often a signal that no one is at home and actually becomes a trigger for inviting intruders to that location in rural areas increasing the risk. Individual providers should be allowed to assess the traditions, culture and experience in their specific geographic location in making a decision about exterior lighting throughout the night and the regulations should clearly protect their ability to do so without the risk of licensing citation.
4. 106 – 560 – A4 – seatbelts – “requiring individuals receiving services to wear appropriate seatbelts or restraints” – requiring individuals we serve to do anything is problematic at best with this being an excellent case in point – how does the state expect us to enforce this requirement; do we replace seatbelt buckles with ones that lock and then manhandle them into position and lock them in impinging upon their human/HCBS rights or do we just refuse to transport them anywhere if they refuse to wear their belt, which would significantly impinge upon their human/HCBS community access rights and could result in them becoming permanently home bound. If this requirement is maintained the regulations need to clearly spell out how providers are permitted to accomplish the regulatory requirement. Currently, if anyone protests the wearing of the seatbelt we reinforce their right not to, but point out that it is a violation of Virginia state law with a significant financial fine which they will have to pay from their own money; identifying the quantity of preferred items they would have to forgo to pay the fine-which has been very effective and everyone buckles up on every trip, so we do currently meet the requirement; but have no idea how we could force a person who insists on their right to civil disobedience and agreed to pay the fine, where we would have to defer to their dignity of risk rights. How can the DBHDS justify a higher penalty for an individual served than the law currently allows for individuals not receiving HCBS services? This appears to be an on face a violation of CMS HCBS rights and should be removed or amended to ensure HCBS rights compliance.
5. 106 – 550 – Privacy – #4 – open houses – at the very least this is an atypical use of the term (meaning open to the general public) and even the language here refers to “events” and provides restrictive qualifiers that would require an “open house” to be declared whenever an individual served exercised their human/HCBS rights to have resident visitors, clergy, lawyers, probation officers etc. listed in those regulations into their home. Depending on how interpreted and implemented by the organization this could become a perceived impediment to exercising those rights, foregoing visitor rights to avoid triggering an “open House”(with whatever strictures that may bring) for them or peers – this requires significant rework to accomplish the proposed purpose in a much less generalized and restrictive manner.
6. 106 – 550 – privacy – #5 – prohibition on staff visitors – a blanket prohibition is unwarranted, excessive and counterproductive. Initially, there is no established necessity based in fact (see earlier post). I submit that all providers have policies and/or practices in place currently to regulate staff visitors, both as regards visit time/length and restrictions on visitor’s interaction/access; if not they could be required as a less restrictive means of achieving the regulatory intent. However, even this is unnecessary without a demonstrated necessity based in fact – how many CHRIS and/or serious incident reports annually involve or implicate staff visitors? What anecdotal evidence is there that staff visitors have been a concern? Without some specific documentation of a concern it is impossible to establish the necessity for the regulation, least restrictive measures and weigh any potential benefits against the disadvantages of the regulation. If the risk is so great and/or this regulation is implemented, then DBHDS should provide 3^rd shift (11 PM – 7 AM) unannounced licensing visits, because of the greater risk on this shift due to the absence of other staff persons to monitor, correct and report. Implementation of this regulation would have a significant negative impact on individuals served, which must be weighed against any perceived advantages of the regulation. 1^st – individual provider choice would be diminished. This regulation would create a serious disincentive (perhaps the hidden agenda here) for sponsored placement and shared residence group homes, as individuals providing these services would be denied the ability to have their friends and/or family visit them in their own home, ever. Some homes would close directly denying individuals who were there their informed choice of service in provider, others would never be created further limiting the options of all individuals served in the Commonwealth. 2^nd – community integration efforts would be undermined. Staff visitors to our home are both rare and brief (typically to drop off or pick up something), with the exception of event visits (birthday parties, Thanksgiving/ Christmas dinners, a summer cookout)and occasional dinner invitations, where staff are encouraged to invite significant others to share the social experience. All of the individuals served in the home are positive about these traditions and each participates in preparation of one or more dishes for the holiday dinners, taking great pride in their contribution. Under this proposed regulation, opportunities to expand positive community social interaction would be lost and the individuals in the home would be more insulated from the larger community. Not only would they lose direct social contact with the community; but also, opportunities that are generated for community integration through that contact: an Assistant House manager whose husband was a local minister, visited during an event/dinner and had positive interaction with the Individuals served; resulting in 3 of them who had not attended church previously beginning to attend church more frequently – 2 of them regularly, where the opportunity for social interaction and development of natural supports was greatly enhanced; a DSP’s son, who is an athletic coach at a local high school, visited for Thanksgiving dinner and interacted well with a sports minded individual we serve, who has since attended the coaches games and we hope to develop a source of natural supports from this contact. The director’s parents, who have known and interacted with some individuals 16+ years occasionally provide natural supports in the home and community which is highly valued by the individuals served. Enforcement interpretations would be difficult and further reduce community integration – when neighbors drop by to thank us for the Christmas cookie trays, should I kick them out if they talk more to staff than the individuals served because they become staff visitors? 3^rd – HCBS visitation rights of individuals served would be undermined. The director’s parents attend almost every birthday for individuals served (bring a present) and their attendance is both requested and anticipated by the individual. However, under this regulation the provider would be in a dilemma where they can either a) deny the Individual served the right to have visitors of their choice; thus clearly violating their HCBS rights or b) allow the visitors and run the risk of a licensing citation because being direct relatives they are arguably there to visit staff. This is just one of numerous examples. The full-time staff who provide the bulk of services in our group home has an average of 11.5 years of service (the lowest is 8 years) with the individuals we serve, with almost daily contact across such lengthy time frames it would be unnatural for the 2 individuals not to be aware of the others family and individuals served often comment that they would like to meet significant others of staff, which we typically accommodate given the positive community integration that results. A blanket prohibition on staff visitors would have precluded all of these successful community integration experiences from ever occurring, further isolating individuals served from the larger community. Recommendation – eliminate the provision completely or exempt homes (sponsored placement/group) or require a policy that permits individual provider discretion/flexibility in balancing objectives and providing protections during staff visitations.
7. 106 – 810 – emergency preparedness and response plan – A 2 & 3 are overly prescriptive as to format, our current plan which is designed to promote training, understanding and effective utilization includes specific scenario responses based on hazard priority now in section 3 and we should not be punished for already complying with the regulation by having to rewrite the plan and retrain everyone just to place this material in “annexes” as would be required by this regulation – another unfunded mandate that would make the training and response less effective. Section A4 – evacuation plan – a- requires “current MOU or MOA or other arrangement (hotel accommodation) with local/regional sites”; while this may be appropriate for large organizations with lots of people to move (requiring buses, ambulance transportation, significant resources etc.) it is wholly inappropriate for very small organizations and it is highly doubtful that they would be able to secure an MOU or MOA for a group of 2, 4 or 6 people; even if they were able to secure hotel accommodations for some unknown future event at some unknown time this would provide no actual guarantee of their availability when that time arrived making the requirement useless. Additionally, this becomes another very large unfunded mandate as we don’t know what direction we would have to run, how far or for how long; the regulation as written would require us to develop agreements in all the ordinal directions of the map at various stages along the way for some unknown distance. Even if we could get these agreements the cost of pursuing them alone would significantly adversely impact small businesses. Small businesses/providers should be excluded from this provision consistent with the APA. Section D – annual outreach to local emergency officials – this is an institutional requirement in Virginia law which already covers large commercial institutions and the inclusion here is duplicate extending this institutional requirement to small homes and would have a negative impact on small rural providers where there is no demonstrated necessity based in fact for this provision to be applied. Simply, in past coordination efforts we were told we were over prepared and had less to worry about “out there in the county” and it was recommended we attend their community emergency seminars – which we did and they focus just on the urban response and had nothing to offer for rural residents making it a complete waste of time. Again, another unfunded mandate that takes away from services and serves no realistic function --- requiring a small business exemption or other adjustment as required by the APA for small businesses.

8. Postings – 106 – 400; 410; 510; 380 and probably a few others I missed, require postings of various information, to be added to the wall postings already required by previous regulations; some of the required postings are multiple pages in length and cumulatively these postings will take up large sections of wall with framed narratives that definitively invoke the perception of an institution and undermine the perception of a home. These provisions would also impinge upon an individual’s HCBS right to decorate common areas in their home according to their preferences, as each of the state requirements squeeze out space/ opportunities for inclusions by individuals who reside in that home. We currently make all this information and much more readily available to any individual via free access, supported review and training on our policy and procedure manual at any time upon request and this has been effective in relaying the information. If the state does not want to remove these entirely, at the very least, all of these postings could be reduced to a single frame wall posting indicating where and how the information can be accessed which would effectively serve the purpose of the regulation without creating another unfunded mandate, institutionalizing the home and generating risk to the rights of individuals served.

    

    

   On a separate topic – numerous provisions in the proposed regulations require the provider to notify DBHDS/OL (often in writing) of various changes, actions or updates which is all fine and good – however, the regulation should specifically include to whom, how this notification will be provided and should require a written response to provide documented verification for the provider that the notification was received and in the case of changes (policies, procedures, practice etc.) verification that these changes were approved and if not what would need to be changed to gain approval. Past efforts to submit and elicit approval for various changes have been very problematic, and in some cases policies that appear to have been approved by DBDHS can become violations when a new licensing specialist comes on board.