Location

It is very important to consider the geographic location of new accommodation when someone living with PWS enters adulthood. Most young adults have built up support networks within their community and are confident and familiar within their family home. It can be a very difficult exercise to rebuild these connections in a new geographical location. Moving to an unfamiliar location means they will lose these connections, familiarity and existing support networks which can negatively impact on their confidence and be extremely challenging to rebuild. Having said that, it is also important to actually move out of the family home but moving “around the corner” perhaps isn’t best-case scenario for growth and independence of the person moving out as they can develop a continued unhealthy reliance and dependence on family members inhibiting their growth into adulthood. Group homes aim to foster and develop a level of independence that matches the person’s skills and needs.

Staffing

A PWS educated staffing team is a must at any group home. As parents, you want to feel confident that the supporting team have a least some level of understanding of the complicated nuances of PWS and how to best support your child. Throw into the mix, additional training in diabetes, nutrition, exercise, and behaviour support from registered as a minimum requirement for any PWS group home beyond just supervision.  It is also important that this training is backed up by regular ongoing checking in with family, care providers, support team and staff to make any necessary adjustments in training and routine to continue to achieve the best outcome.

Take your time

It is very important that the process of moving into a new group home is gradual over time. While circumstances won’t always allow this to happen, I have found the best results have always come when time is taken to move into a new living arrangement. Take time to get to know the new housemates, come over to dinner, meet staff, spend a night and get to know the new house routines. When ready to actually move in, one of the most important aspects I have found is to have a routine already set in place that is similar to the routine that will be followed at the group home. From my experience, not having a routine can be very counterproductive and set back plans for several months while trying to implement best practices for those living in the group home. With a dedicated individual routine set out from the start, we are setting a baseline for reference which is important for not only the new resident but for staff to always refer to. This routine must be made jointly with all stakeholders and be aligned with the set values of the home. The more time dedicated to the moving process the better the outcomes for short term and long-term housing prospects.

Property Design

The physical layout of the house must always be considered when looking for new accommodation. One of the key things to look out for is access to the kitchen or how the kitchen is set up. But what is often overlooked is the other space, lounge room, bedroom, and how the house is set up between all residents from personal to shared spaces. I know from experience that a house that is cramped with bedrooms opening on to each other will cause friction at some point in time. Open space and different access points are important to avoid conflict.  If you have the option, I would be considering a residence with as much space as possible. Young adults with PWS, while very sociable, are also very egocentric and living under the one roof having to share all spaces can cause friction. Multiple living areas that can be shared or enjoyed independently in addition to one’s own bedroom are ideal.  The more space and more of their “own space” the more secure and safe they will feel. Ideally, having your own self-contained unit would be the best housing option, but unfortunately, these are still yet to be developed and could be considered isolating and lonely. Hopefully,  in the near future, there will be more suitable housing options for young adults with PWS transitioning into adulthood and independent housing away from the family home.

Expectations

Lastly, and most importantly, understanding and managing expectations. Supported Independent Living (SIL) is not the family home, it will never replicate the family home, and it is not set up to do that. The primary role of group homes as SIL providers is to support and educate independence in individuals living with PWS with compassion and understanding and to facilitate their independent living as much as is possible. This can be a difficult adjustment for the parents as much as it is for the young adult transitioning. Coming from a family environment where individuals have been loved, cared for and sheltered for most of their lives by their parents, siblings, carers and other relatives, it can be very difficult to transition into a new group home for everyone. It’s vitally important to work collaboratively with families and staff to ensure that we are working from the same chapter, but also to understand that the role of a SIL worker is very different to that of a Mother or Father. This is a time of change for all. Transitioning the right way can make this process into adulthood less stressful and actually an enjoyable experience.

The post PWS Individual Transitions into Shared Accommodation appeared first on Prader-Willi Syndrome Association of Victoria, Australia.

This article will hopefully give you some insight and tips to help you navigate the PWS challenges at home while we are living in a world that requires us to follow professional advice of isolation and social distancing.

On any regular day at the House, the day mainly consists of off-site Day Programs for the residents from 9-4 pm. With the residents occupied off-site, this allows staff to clean, and more importantly prepare and cook meals in advance without the residents around. The success of the House relies on routine routine routine! Following routine is how we most effectively work with both the PWS behavioural and food issues.

As you would be aware, the COVID-19 pandemic has altered our regular daily routine. 

The biggest challenge we have faced is having almost no opportunity to prepare meals away from the residents as they are all following isolation and social distancing guidelines, therefore are in the home for most of the day. 

Another challenge has been the reduction in incidental exercise from being out in the community. How have we coped? Like most of you, we have developed new strategies, new routines and made things up as we go along, with a lot of trial and error. It’s not easy, but we have certainly surprised ourselves with some creative solutions that have shown to be working.

Below is a list of helpful tips for families, that we have found to work:

Exercise

• We try to be very creative with our exercise to encourage participation.
• Ball games have been introduced, and we encourage our residents to walk to the local park to participate in this activity 
• Staff are bringing their dogs to work with them. This encourages our residents to take a walk with the dog, play with them and groom them. This is always a novelty because the dogs are not a permanent fixture at the house. If you don’t currently have a dog, perhaps a friend could loan you their dog for a day or a few hours?
• Housework is a fantastic exercise that we have incorporated into our routine. Thursday is now Cleaning Day, and we involve the residents in this thorough house clean. It gets the residents up and moving and participating in house duties. Of course, this is in addition to the daily staff cleaning schedules.
• You-Tube exercise videos have been a hit. There are a lot more around, and new ones are being uploaded every day. These are great when the weather isn’t ideal. We have set up a space in the living room so the residents can all join in. Some good YouTube channels that we have found to engage the residents and get them up and moving are ‘PE with Joe’ and ‘Cosmic Kids Yoga’.

Distraction activities

• Board games and puzzles are a great way to use up spare hours.
• Art is a big part of our house and is an excellent distraction.
• Get out some chalk draw on the pavement, trace around your bodies and complete a self-portrait. Or use some window paints or liquid chalk pens to draw pictures on the windows.
• Pearl beads are also a fun way to take up a lot of time. Sets are available at Ikea

Meal preparation

• We utilise opportunities when residents are at the park to get as much meal prep done as we can.
• When residents are home, distraction is the key. And this doesn’t come without its fair share of challenges!
• Meal prep is done very cautiously and with a higher level of awareness and focus.
• We try out best to keep residents highly engaged and distracted with activities as best we can, while meal prep is in progress.
• We are doing our best to prep meals in bulk (2-3 days at a time), where possible to avoid preparing meals daily to minimise the residents‘ exposure to food outside of mealtimes.

We are all in this together – Good luck and please don’t hesitate to reach out for support if you need it.

The post Home isolation in a PWS Specific Adult Group Home appeared first on Prader-Willi Syndrome Association of Victoria, Australia.