Aging in Place Home Modifications for Victims of Genetic Syndromes

Genetic Syndromes include Down Syndrome, Angelman Syndrome, and Prader-Willi Syndrome. Home modifications planned by a Certified Aging in Place Specialist can make living with Genetic Syndromes easier and better.

According to Beyond Accessibility, Genetic Syndrome victims can have decreased motor skills including low tone, ataxia, poor balance, decreased strength, and limited endurance. Examples of aging-in-place home modifications for all Genetic Syndrome victims includes:

• Zero-step entry or wider/bigger steps at entry

• Additional handrails or grab bars at entrances, toilet and bathing areas, stairs, and in hallways

• Nonslip surfaces on stairs and steps

• Level yard areas and walkway to vehicles, bus stops, and mailbox

• Wider sidewalks, big enough for 2 people or adaptive equipment (walker or wheelchair)

• Remove hazards in walking areas such as rugs and different elevations

• Clearly mark changes in walking surface to be easily visible

• Replace tub with shower or walk-in tub

• Built-in or portable bath or shower seat

• Non-skid floor or mat in the bathtub or shower

• Water-resistant and slip resistant flooring in any potentially wet areas

• Space for exercise indoors and outdoors

• Bidet on toilet to help with cleaning after using the toilet

• Larger shower spaces

Home modifications to accommodate general safety and ability to complete daily tasks include:

• Correct size toilet, with foot rest if needed (or squatty potty)

• Smaller or larger toilet seat depending on personal size

• Shorter or taller toilet seat height depending on personal size

• Faucets that are easy to reach and turn on/off

• Faucet extenders for people with limited reach

• Handheld shower head (can help a lot with hair washing)

• Easy to open kitchen refridgerator and storage area doors

• Lever handles throughout the home on doors and faucets

• Hooks to hang coats, bags, and towels

• Creating a bathing space that is water-proof (or a "wet room")

• Places to sit while dressing and while putting off/on shoes

• Clear and accessible storage and organization in play areas, bedrooms, and for school work to support independence

• Clear and accessible storage and organization in areas of daily care, such as closet and bathrooms

Home modifications for positioning needs for alignment and support in daily tasks such as spinal issues or low tone concerns include:

• Space for specialty seating equipment in dining room, living room, and bathing areas

• Room for specialty beds or hospital beds

• Temporary or permanent need for adaptive equipment, such as walkers or wheelchairs

• Room in home for larger furniture, such as chairs and beds

Home modifications for victims with intellectual impairment, concerns for judgement and safety, and a variety of behavioral concerns, include:

• Control access to unsafe items (ex. cleaning supplies, chemicals, medications, and knives) with locking cupboards, drawers, cabinets, or closets

• Restrict access to unsafe areas of the home with gates, locking doors, or dutch doors

• Gates with locks at the top and bottom of stairs

• Scald-resistant faucets and shower heads

• Talking smoke detectors

• Oven knob covers (or induction stove) and stove locks

• Door knob covers

• Fenced in yard

• Alarms on windows/doors and video monitors throughout the house

• Shatterproof windows and mirrors

Home modifications for victims with impaired vision include:

• Increase lighting on stairs and any dark areas such as hallways or closets

• Clear and simple environments (avoid patterns in carpet and on walls)

• Use of organization strategies to decrease visual stimulation

Home modifications for victims with sensory processing disorders include:

• Play area on a table, rather than the floor for easier access

• Indoor sensory-motor spaces such as slides, swings, trampolines, mirrors, area for wheeled toys, ball pit, sensory play areas, crash pads, readmill, bean bags, rocking chairs, therapy balls, etc)

• Plan for adult-sized play and exercise equipment

• Re-purpose spaces such as a basement, closet, or convert a garage to make room for equipment

• Creating “safe” spaces, using a closet space or other enclosed space

• Outdoor play areas with easy to access play opportunities

Home modifications for caregivers for victims of genetic syndromes include:

• Additional washer and dryer to keep up with laundry needs

• Clear sight lines in floor plan for supervision

• Clear sight lines to outdoor play area for supervision

• Sufficient space for caregiver to provide care while using good body mechanics

• Keypad for access to home for adults and staff

• Respite space for parents and siblings

• Durable, easy to clean surfaces in home

The home modifications listed above are representative. Please note that every child, every family, and every home is different, with unique needs. Every idea does not apply to every child, family, or home. This list does not replace having a home modification assessment for your family; nor does it replace the need for a skilled Occupational Therapist to work in-person with you and your building team. All ideas are implemented at your own risk; please use caution and judgment. Consult with a CAPS advisor. Home modifications can greatly improve quality of life, but should be combined with the direct services of skilled professionals, such as therapists, doctors, and social workers.

If someone you know suffers from a genetic syndrome such as Down Syndrome, Angelman Syndrome, or Prader-Willi Syndrome, please call Richard at 615-752-0060 to discuss the needs for a home safety inspection and home modification. For more information about the services Richard provides please see Residential Accessibility.

Thank you.