Institutionalizing The Home- A number of provisions across the regulatory set that serve to institutionalize the home are of dubious necessity, dysfunctional and/or detrimental for very small residential settings attempting to provide a home rather than a facility.
12 VAC 35 – 107 – 260 and 190- lock it up provisions-Because for licensing agents that’s what “secure” means are perhaps one of the most egregious examples of this as it constitutes an insult to the adult individuals that we serve.
1st – the necessity of this provision is extremely unclear exactly how many people stick their hands in used sharp containers (especially since their designed with small openings that would appear to preclude this locked or not); how many examples of ingestion and/or injury from misuse of cleaning/car/garden supplies actually occur each year. In my 23 year experience of operating group/sponsor homes, there has not been a single incident involving consumption/misuse, much less injury from any of the listed items and access/use by individual served has been ubiquitous. Is a blanket provision across all providers really a necessity for health and safety?
2nd –This is not only just plain insulting to the individuals we serve (assumes none of them have the intellectual capacity to avoid drinking bleach) but it also represents a serious infringement upon their individual rights at both the state and federal level. At the state level is a direct violation of 12 VAC 35 – 115 – 100 that individuals should “enjoy all the freedoms of everyday life that are consistent with his need for services his protection and the protection of others”, if locking up these items are not consistent with the need for service/protection. Even the loopholes in this the blanket prohibition across individual/service contained in this regulation would surely be in violation of A2 of that provision that requires services under those conditions that are “least restrictive of his freedom” – as prohibiting access is the most restrictive way. At the federal level, this clearly requires a violation of the right to free access to their home and grounds as it would result in a number of items they now use regularly, independently and safely being locked up so that their access is restricted; at the very least it violates the spirit of the HCBS rights by requiring that individuals receiving services be treated differently from individuals that are not thus restricting their freedom more than would be acceptable for the general population.
3rd –This provision will undermine infection control efforts and create a far greater danger of risk to individuals served than the infinitesimal risk for ingestion/misuse of cleaning/car/garden supplies. Due to Covid 19 disinfecting and cleaning supplies have been made available openly at the entrance(s) to the home and their use required upon entry, placing these out of reach and locked up will make their consistent use much less likely increasing the risk of Covid. Currently, disinfecting wipes are made readily available for countertops/other surfaces in the kitchen and bathroom areas, again locking these up would greatly reduce their use thus increasing the risk of Covid, flu and other infections. The requirement for original containers would eliminate prior preparation of bleach cleaning solutions, which are recommended in almost all standard infection control precautions/protocols and/or create an unfunded mandate for the purchase of much more expensive pre-mixed solutions that would still be locked up; thus severely undermine the regular use of this vital infection control mechanism.
4th – this provision only serves to institutionalize the home and devalues the skills/independence that most of the adult individuals currently served are able to demonstrate absent this provision. Seriously, if you have a home full of all adults do you actually lock up and hide every single cleaning/car/garden supply – I doubt it and if you do it is a cultural not a safety considerations. People living in rural cultures have spent their entire life with cleaning supplies readily available, dish soap on the sink, laundry agents and marked spray bottles of mixed cleaning solutions and it would be extremely rare to enter the rural cultural home and not find any of these display. If this provision is adopted and the individuals we serve ask why their rights are being restricted, the truthful answer will be that the state has determined that they are different from everybody else in the world, requiring special protections and abnormal circumstance in their daily life – which is a shame and the very attitude we should be fighting against.
RECOMMENDATIONs: 1) remove these provisions as unnecessary; 2) exempt sponsored and small group homes who are attempting to maintain a homelike environment from these provisions or 3) require risk for ingestion/misuse of these substances be assessed at the time of individual intake and ongoing through the risk management/quality improvement mechanisms and that whenever a greater than normal risk is assessed require the provider to take appropriate preventative measures; following up on CHRIS reported violations with those mechanisms to assure compliance – while not optimal this would be more consistent with the least restrictive requirements on individual rights than the regulatory provisions included here.
12 VAC 35 – 107 – 170 Nutrition Section B 2,3,4,5,7 – These provisions are internally contradictory, unworkable in real-life and/or place a significant superfluous burden for documentation on providers – yet another unfunded mandate. Specifically, the B7 requirement that requires adaptation to individuals who change their mind in real time makes the development of menu prepared in advance superfluous (B 2), makes B3 meaningless/impossible and creates a constantly moving target for B5. In our home, we survey individuals and make any menu items requested available but for breakfast/lunch each person individually decides what they are going to have from a large available selection and each individual has a night where they select the menu for the group dinner meal; which they can change for themselves individually on any night they don't like the selection. While we have had some success in filling in the evening menu on a weekly basis, it is often like pulling teeth because people don't know what they will want a few days from now; making trying to prepare a menu a month in advance and then enforcing that it "be followed" problematic at best. Even if it is not the intent of this provision, the regulatory pressure on providers to demonstrate compliance with this regulation would undoubtedly lead to the development of staff generated menus, with purchases limited to following those menus and pressure on individuals to accept the scheduled menu items, which would infringe on both their state freedoms of everyday life and their federal freedom for access to any food at any time.
RECOMMENDATIONs: remove these provisions from the regulatory requirements and allow demonstration of the ability to self-select from a range of foods that meet the other requirements in this section and the retention of a list of items available and group meals selected as sufficient to allow for oversight/review of the spirit of these provisions.
12 VAC 35 – 106 – 560 – A4 – requiring individuals served to wear seatbelts – earlier comments on how problematic this regulation would be to actually implement for providers were ignored and the only response to these concerns was that the seatbelt requirement is Virginia state law – which while true is not relevant to the concerns expressed. Specifically, as a Virginia state law it establishes competent trained law enforcement authorities as the individuals to enforce the law and prescribes very specific penalties for infractions, which are then adjudicated by courts to assure due process in their application. Unfortunately, this regulatory requirement (which has the force of law on providers) does not recognize these aspects of the Virginia state law and inappropriately places untrained providers/DSPs in the role of law enforcement, the regulation fails to stipulate either the penalties the provider is supposed to use in enforcing this regulation nor does it provide any due process protections in that enforcement. Presumably, consistent with other state laws the only recourse the provider would have if the individual refused to wear their seatbelt would be to not transport them and just let them set in the car without it moving if they so desired-anything else would be a different rights violation. If the individual was a consistent refuser this would quickly violate their rights to access the community and community resources and if they consistently refused to get out of professional health appointments it would jeopardize their health to a greater extent than the absence of the seatbelt. This would in effect create an extrajudicial, nonproportional enforcement/penalty on individuals with ID/DD that is not imposed on those not receiving HCBS services, which on its face violates the federal HCBS protections---remove it.
12 VAC 35 – 106 – 370 and 500 – both create additional wall postings that the provider would have to add to the myriad of already required wall postings – neither provision is necessary because these are covered in the pre-intake and post intake orientation and remain readily self-evident throughout the entire duration of an individual’s services. Both provisions serve to further institutionalize the home by requiring the removal of preferred home decor to create space (often decor they selected consistent with their HCBS rights to have a role in decorating the common areas of their home) and replace it with regulatorily required language similar to any other institution.
RECOMMENDATIONs: 1) remove the requirement for posting and allow this to be covered under on boarding, 2) reduce these down from separate individual postings and allow only one posting that list these items (along with others) as information that is available upon request on a single posting Or 3) exempt sponsored placement and small group homes that are making every effort to achieve a homelike environment similar to those enjoyed by individuals not receiving HCBS services as required by the federal HCBS settings/rights protections
12 VAC 105 – 530 – monthly fire drills – Earlier comments on the dangers associated with this provision have gone unheeded and unaddressed – the state response was to point at other code provisions/practices for other types of long-term care facilities and include HCBS settings in with them for the purposes of making the regulatory requirement on HCBS settings. This is consistent with a long-established state practice of including HCBS settings whenever there is a restriction/penalty associated with these other provisions; but never including HCBS settings when there are benefits to being included with these settings (most recently the extra $20 per person per day during the Covid epidemic) – if you're not going to include us when there's benefits to be had, then don't include us when there's restriction/penalties to be doled out – it's just not fair. The necessity of this provision for the safety of the individual served is also very dubious, I am not aware of and a literature search did not uncover any recent examples of individuals served in HCBS settings in Virginia being killed or injured in a fire due to inadequate evacuation. In fact, these required drills in our homes (and I'm betting a large majority of other homes) have consistently verified that both the individuals served and the staff have sufficient training and competency to accomplish the evacuation in under the prescribed time, unfailingly, consistently over and over again and that in the event of a fire evacuation would not be a risk; this was also true for years when only quarterly drills were conducted. In fact, the impact of a return of monthly drills has been increased resistance to the disruption in the life of the individual served and in some cases reluctance (which will eventually become refusal) to respond as they complain about it only being another drill; which could create resistance that would be problematic in the event of a real fire.
RECOMMENDATIONs: 1) adopt a quarterly requirement, that requires more frequent (monthly) performance if any drill performance falls outside of the prescribed standards for evacuation; 2) adopt a requirement that allows an individual provider to move to quarterly drills if 6 months of monthly drills demonstrated ongoing skills/competency necessary for a timely evacuation; or 3) adopt a quarterly requirement for sponsored/small group homes to replace the monthly requirement any option would be less restrictive/disruptive for the Individuals served in the home.
12 VAC 35 – 106 – 700 – ANIMALS- 2 separate provisions of this inclusion are independently problematic:
1st section E1, 3 and D- are internally contradictory, unclear and potentially detrimental to the individuals served. Specifically while it may be reasonable (but I doubt it) to not accept staff allergies and fear of dogs as valid reasons for refusing service animals; it becomes much more problematic when individuals already served in the home have severe allergies, that cannot be controlled through other adaptations (thus creating a direct threat to the physical health of others) and/or they have posttraumatic stress associated with earlier animal interactions or a diagnosis of a mental health phobia (thus creating a direct threat to the mental health of others). Should people lose their job or their home because of physical and/or mental conditions which they have no control over – these provisions would appear to say yes but fairness requires the opposite conclusion; recommend either clarify or removing the internal contradiction.
2nd sections A and B, clearly represent an elitist/urban cultural bias that is wholly inappropriate for and culturally insensitive/destructive for rural individuals and their culture. It appears that section A would apply to farm animals and reoccurring wildlife who have chosen to domicile on the property, which is an impossible standard outside the scope of the DBHDS. Additionally, some of the animals that the standard is specifically covers (i.e. strays) require compliance that is impossible or cruel. Specifically, we have in many rural areas "barn cats", these are cats who come and go as they please choosing to occasionally reside in the barn on the premises for lengthy periods of time (often in the winter). These cats are a long-standing tradition in rural farm communities and a recognized part of that culture; however, they are often very difficult to capture, would be very expensive to provide veterinary/licensing services to, would run away or be even more impossible to catch (after the first time) never completing inoculations or never to return and are only accepted by the SPCA or other agencies and very limited numbers – which means they have no place to go even if you can catch them. Typically, these cats live off the land most of the year; however, in the winter when streams/ponds and other sources of water are frozen over and food is much scarcer, rural cultures have typically provided fresh water and occasional food to help them get through the winter months, without negative incident. If these provisions are passed, then rural individuals would have to make a devastating choice either to watch these animals slowly die of starvation/dehydration or just shoot them and put them out of their misery – which choice does the state think we should make and how do they propose we explain this inhumanity/cruelty to the individuals that we serve. RECOMMENDATIONs: 1) delete the offending inclusions; 2) provide an exemption for barn cats out of respect for rural culture, traditions and the welfare of the animals; or 3) Limit the application of these provisions to areas that receive NOVA payment rates were the intent and cultural sensitivity of the provisions may be more appropriate.