ARTICLE
QUESTION: Has any group home providers served/currently serving a client with Prader Willi? If so, what is the structure of the home in regard to locking the refrigerators and/or cabinets? In the past, we served a young woman with Prader Willi in one of our group homes. It was challenging to meet her needs with minimal restrictions to the other clients. In this particular home, we had two other clients who required kitchen restrictions for health and safety issues as well. The kitchen was kept locked and the three clients who did not need kitchen supervision had a key they could utilize independently. One thing we have used in another scenario is a keypad lock on the kitchen door. Those who could have open access had the code, and anyone with a health/safety issue accessed the kitchen with staff assistance. We currently have one person with Prader Willi. Our person also has a blindness diagnosis so accessing food is not as easy as it would be for others who are not blind. Therefore, we do not have to lock cabinets or the refrigerator. We do have other situations where we have sought HRC approval per team request for locked cabinets and refrigerator due to overeating. We have tried a variety of locks and it seems that padlocks with keys are the best solution. Combination locks and/or fingerprint locks are not as effective. Our agency does not serve any group home clients with Prader Willi; however, we do serve clients that "sneak" large quantities of food out of the kitchen and take it to their room to eat. In those homes, our agency has installed alarms on kitchen cabinets, refrigerator and freezer doors. The alarm will sound when a door is opened which alerts staff to go see who is in the kitchen. Alarms are approved by our HRC Committee. Serving clients with PWS is especially difficult in group homes because of the need to allow access to those who are not being restricted. In other words, you cannot restrict the whole group based on the needs of one client. The Prader Willi Syndrome Association supports locks (e.g., https://pwcf.org/wp-content/uploads/sites/18/2015/10/Locks-Locks-and-Alarms.pdf), but that alone will not satisfy surveyors. Bottom line - you need to find a way to allow access to others in the home. You won't be able to just get their permission to lock the cabinets or refrigerator. Surveyors also are not going to allow the provider to require that the other clients ask staff permission for the cabinets to be unlocked when they want something. That may not seem too unreasonable, but it will lead to further citations. It's similar to sharps being locked up because one SGL client has safety issues. You aren't going to be allowed to restrict the others because of one client's behavior. One complicated way to make this work is to provide each other client a working lock box. This could be a combination if the client can manage that or it could be a finger print lock. In that lock box, the person has a key that unlocks the cabinets. Then you will need to demonstrate that the client has been trained and has the skill to unlock the cabinets without restriction. The client with PWS does not have the access due to his/her restriction. However, the others are not restricted because they have access to their own keys. They can optionally ask staff to unlock the cabinets, but that no longer is considered a restriction because they have their own keys. It is difficult to make this work, especially if the other clients are not able to manage their own keys. Another option is to lock access to the cabinets with a lock on the kitchen door. If the other residents of the home cannot figure out a combination, you could make it biometric. Then train all the other clients how to unlock the kitchen with a finger print. Most such locks will accept a large number of finger prints. Then all staff finger prints and those clients without restriction have access. It may seem needlessly complicated, but unless everyone has the same need for the locked food restriction, there are not many options. Our company closed the ICF that served people with PWS due to ongoing survey issues with restrictions. These individuals are now being served in Waiver services without any regulatory issues regarding needed restrictions. This information is a compilation of suggestions, ideas, and opinions shared by INARF Members in response to the featured question. This information should not be considered official interpretation or guidance of State or Federal Policy. Additionally, statements within this document do not necessarily reflect an official position or opinion of INARF.
QUESTION: Has any group home providers served/currently serving a client with Prader Willi? If so, what is the structure of the home in regard to locking the refrigerators and/or cabinets?
In the past, we served a young woman with Prader Willi in one of our group homes. It was challenging to meet her needs with minimal restrictions to the other clients. In this particular home, we had two other clients who required kitchen restrictions for health and safety issues as well. The kitchen was kept locked and the three clients who did not need kitchen supervision had a key they could utilize independently.
One thing we have used in another scenario is a keypad lock on the kitchen door. Those who could have open access had the code, and anyone with a health/safety issue accessed the kitchen with staff assistance.
We currently have one person with Prader Willi. Our person also has a blindness diagnosis so accessing food is not as easy as it would be for others who are not blind. Therefore, we do not have to lock cabinets or the refrigerator. We do have other situations where we have sought HRC approval per team request for locked cabinets and refrigerator due to overeating. We have tried a variety of locks and it seems that padlocks with keys are the best solution. Combination locks and/or fingerprint locks are not as effective.
Our agency does not serve any group home clients with Prader Willi; however, we do serve clients that "sneak" large quantities of food out of the kitchen and take it to their room to eat.
In those homes, our agency has installed alarms on kitchen cabinets, refrigerator and freezer doors. The alarm will sound when a door is opened which alerts staff to go see who is in the kitchen. Alarms are approved by our HRC Committee.
Serving clients with PWS is especially difficult in group homes because of the need to allow access to those who are not being restricted. In other words, you cannot restrict the whole group based on the needs of one client.
The Prader Willi Syndrome Association supports locks (e.g., https://pwcf.org/wp-content/uploads/sites/18/2015/10/Locks-Locks-and-Alarms.pdf), but that alone will not satisfy surveyors.
Bottom line - you need to find a way to allow access to others in the home. You won't be able to just get their permission to lock the cabinets or refrigerator. Surveyors also are not going to allow the provider to require that the other clients ask staff permission for the cabinets to be unlocked when they want something. That may not seem too unreasonable, but it will lead to further citations.
It's similar to sharps being locked up because one SGL client has safety issues. You aren't going to be allowed to restrict the others because of one client's behavior.
One complicated way to make this work is to provide each other client a working lock box. This could be a combination if the client can manage that or it could be a finger print lock. In that lock box, the person has a key that unlocks the cabinets. Then you will need to demonstrate that the client has been trained and has the skill to unlock the cabinets without restriction. The client with PWS does not have the access due to his/her restriction. However, the others are not restricted because they have access to their own keys. They can optionally ask staff to unlock the cabinets, but that no longer is considered a restriction because they have their own keys.
It is difficult to make this work, especially if the other clients are not able to manage their own keys.
Another option is to lock access to the cabinets with a lock on the kitchen door. If the other residents of the home cannot figure out a combination, you could make it biometric. Then train all the other clients how to unlock the kitchen with a finger print. Most such locks will accept a large number of finger prints. Then all staff finger prints and those clients without restriction have access.
It may seem needlessly complicated, but unless everyone has the same need for the locked food restriction, there are not many options.
Our company closed the ICF that served people with PWS due to ongoing survey issues with restrictions. These individuals are now being served in Waiver services without any regulatory issues regarding needed restrictions.