Top 5 Equipment Categories and Recommendations for Rett Syndrome

Top 5 Equipment Categories and Recommendations for Rett Syndrome

Therapists are often asked what equipment is generally recommended for a certain diagnosis. This is a very difficult question to answer on many regards. First, each child with a specific diagnosis presents with individual needs that are unique to them and their caregivers/families. Secondly, there is often great disparity between the levels of assistance children require within a diagnosis. The goal of this article is to try and steer caregivers towards equipment that has traditionally worked well for children with the diagnosis of Rett Syndrome.  Within the article, different equipment needs will be explored with recommendations made for children who are able to walk and/or require minimal to moderate physical assistance and for children who require moderate to significant assistance for postural support and to complete daily activities.  Equipment will be explored to look at seating/positioning, bathing/toileting, mobility, recreation, and lifestyle.
First, let’s explore seating and positioning. Seating and positioning for this purpose is defined as functional seating. It allows for activities of daily living to occur (i.e. eating, learning, sitting with peers and family, accessing the environment). The first seat that comes to mind is the Rifton Activity Chair. This seating system is extremely versatile and will meet a girl’s need regardless of the level of physical capabilities. This seating system is available on a stationary base or a mobile base, it has the option for a high-lo base to make transfers easier or be able to work at a variety of heights, and it has the option for tilt and recline as well as a wide array of positioning supports. One of the best features about this seating system is that it can be modified to meet changing needs by adding or removing the postural supports. This is truly a chair that is highly recommended.

Second, let’s discuss bathing and toileting. Within this category, first it has to be determined if one piece of equipment will meet all needs or if two separate pieces of equipment are required. Once this is decided, here are the recommendations for the different scenarios. For girls that require less physical support, a simple toileting support like the Columbia Toilet Support or the Rifton Blue Wave Toileting System may be all that is required. Girls that require more significant physical assistance may benefit more from the postural support and added features of the Flamingo by Snug Seat. For bathing, a roll in/walk in shower is ideal but not always possible. If a roll in shower is available, the Rifton Blue Wave toileting system or the Flamingo can be used for showering as well as toileting. It is a two for one. If the traditional tub/shower combo is the only option, then there are a few pieces of equipment that can help increase safety. Depending on the size of the child and their ability to assist with a transfer equipment can make a huge difference. If the child is under the age of 6-7 then a bath seat like the Leckey Advance or the Snug Seat Manatee will meet the needs of most children regardless of the level of physical involvement with the use of the positioning accessories. If a caregiver has a bad back and is unable to lift or if a child is larger and more difficult to transfer, the Robby by Otto Bock with the Quicklift II Bath Lift System may be the best bet as it is light weight and easy to store. The easy storage feature is a plus especially if the bathroom is shared with other members of the household. Another product that is also worthy of consideration is the Columbia Elite Sliding Transfer System. This system allows the caregiver to transfer a child into the system and then roll it into the bathroom. Once in the bathroom, the device attaches to a base that is in the tub and then the child and bath seat are slid across the platform into the tub. A hand held shower is all that is needed to complete the bath. The Manatee by Snug Seat also offers a tub transfer feature. Bath equipment can be especially difficult to figure out the best fit. There are many things to consider when selecting a piece of bathroom equipment beyond the child including the size of the bathroom, number of people using the bathroom, the doorway width (usually the smallest in the house) which can limit how the bathroom is accessed, the features in the bathroom (i.e. tub/shower, etc.) and how the bathroom is organized and laid out. If at anytime, help is needed to help determine which piece of equipment will best fit your individual circumstances, please feel free to contact Tadpole Adaptive for guidance and assistance.

The third area is mobility. Within this section, the primary focus will be for partner assisted mobility devices for long distance mobility and for everyday use. Gait trainers are not being discussed within this article because each child may benefit from a different style and this equipment needs to be trialed with a therapist. Also, many girls walk better with hand held assistance due to a limited tolerance for holding onto the handles of a gait trainer. Now, let’s go back to the mobility devices. For girls that are able to walk but just become fatigued with longer distances, a simple adaptive stroller is a great option. The Convaid stroller line has many features and options to choose from. The EZ-Rider is extremely light weight and offers the least postural support so it may be perfect for the families that would have infrequent use. For the families that would use it more frequently, the Convaid Cruiser is a great option to explore. It is positioned in tilt for fatigue management and offers additional postural supports. For girls that require the mobility device for the majority or all of their mobility needs an adaptive stroller is still a good option as long as custom supports are not required due to scoliosis or other orthopedic changes. The Safari and Rodeo by Convaid are great options to consider. Both of these strollers offer tilt and recline to meet posture and fatigue management needs.

The next category to delve into is recreation. Within this category, we will explore options for the active family. Freedom Concepts is a company that specializes in adaptive bicycles. The great thing about these bicycles is that they offer a wide array of positioning options and the capability for the caregiver to assist with propelling to help decrease the risk of fatigue. An additional piece of equipment to consider is a jogging stroller which provides a comfortable way for a child to travel while parents and caregivers enjoy the outdoors. The Special Tomato Jogger is a great option for the smaller child (smaller referring to height) that collapses easily and is economical. Larger jogging strollers are available, but play close attention to the size and ability to fold.

The last category is lifestyle. This section refers to equipment that can just make life easier. The first piece to explore is a specialty bed. Beds by George is a company that has designed special needs beds with a wide array of features and accessories to give a family peace of mind at night. These beds offer multiple features including side rails, high-lo feature and furniture like design. Second, a car seat can be a must for traveling. For girls that need just a little more than the seat belt to be secured in the car, the EZ-On Vest is a great option to look at and is very economical. Girls that need a little more support to a lot of support while riding, the Recaro line from Thomashilfen is a great product family to consider. These products offer an optional rotating base to make getting in and out the car easier. Finally, fatigue management is a big consideration with Rett Syndrome. Many girls just need a place to relax and chill out. Preferably not on the floor, as this is very hard for caregivers to assist with getting up and down. The Chill-Out chair by Freedom Concepts is a great option to explore. It offers postural support and envelops the child for optimal comfort. The best way to describe it is a comfy recliner for your child. It is available on an optional mobile base, with a tray and in a variety of colors and fabric options so that it can be included in the family room and look like a piece of furniture.

Now that all categories have been explored, comes the question, how will I pay for all of this? The good news is that insurance will cover some of these items. Insurance will typically pay for 1 seating system or mobility system; the strollers and activity chairs are coded the same. Specialty beds are typically covered if proper documentation is provided, but it may be a long fight. Toileting systems and car seats are state dependent as far as coverage and bath chairs are typically not covered. However, waiver programs will provide funding for these systems. This can be a long process since it typically requires a denial from the primary insurance. Other funding options include holding a fundraiser, contacting the local Lions or Kiwanis organizations, the Pepsi Refresh Project, and the United Health Care Grant (one does not need to have UHC insurance to apply). If a fundraiser is planned, please contact an attorney for special needs to properly establish a trust so that the funds can not be taxed as income which may potentially result in ineligibility for state funded insurance and waiver programs. Lastly, Tadpole Adaptive understands the financial challenges that many families face. For this reason, Tadpole Adaptive has developed two options to assist with funding for the necessary and much needed equipment. First, there is the Tadpole Adaptive Registry. This is a special program modeled after a traditional gift registry. A family can create a web page and list the desired equipment, the cost and why it is important. The link can be shared with family and friends through social media and people can then directly donate money to the family and registry for the purchase of the equipment. It is a great way to answer the question regarding what to purchase for holidays and birthdays. For family members that may be less tech savvy the money can be sent directly to Tadpole Adaptive and it will be applied to the registry. Second, there is the 6 months same as cash option through Tadpole Adaptive. It can be difficult to come up extra money on the spot for a big purchase but when it can be spread out over a longer duration, it becomes possible to manage.

Navigating the world of adaptive equipment can be extremely frustrating, overwhelming, and difficult. If even it becomes too much, please feel free to contact Tadpole Adaptive where we are always willing to provide unbiased information, guidance, and advice.