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Respite Care Notebook

Developed with families, CNF created the Respite Care Notebook for families who now use respite care services or are thinking about it. The forms in this Notebook are fully-customizable… allowing you to bring information about your child and his/her needs into one place. Respite caregivers will use that information to provide the best care for your child.

NORD Offers Program Aimed at Providing Caregivers with Relief

This first-of-its-kind assistance program is designed for caregivers of a child or adult diagnosed with a rare disorder. NORD understands that caring for a loved one is a generous gift that demands significant amounts of time, attention, patience and dedication.

The Respite Program provides financial assistance to enable the caregiver a break to attend a conference, event or simply have an afternoon or evening away from caregiving. Financial assistance will be granted up to $800 annually for those who qualify.

What care may be covered?

  • Registered Nurse (RN)
  • Licensed Practical Nurse (LPN)
  • Certified Nursing Assistant (CNA)
  • Home Health Aide (HHA)
  • Non-professional caregiver

Who is eligible?

The caregiver must be a US citizen or permanent resident of the United States for at least six months with evidence of residency, and be willing to undergo a financial evaluation of need to determine if they fall within the program’s financial eligibility guidelines. Additionally, the patient for whom care is being provided must have a confirmed rare disease diagnosis.

How do you apply?

Awards are granted on a first come, first served basis to eligible individuals. There is no fee to apply. Contact a Patient Services Representative at 203.616.4328 or email CaregiverRespite@rarediseases.org.


Respite Locator by State

Funded by the Administration for Community Living, US Department of Health and Human Services, State Lifespan Respite Programs or Projects are run by a designated state government lead agency, which works in collaboration with a state respite coalition and an Aging and Disability Resource Center Program/No Wrong Door System. Their purpose is to implement statewide systems of coordinated, community-based respite for family caregivers caring for individuals with special needs of all ages. Since 2009. thirty-seven states and the District of Columbia have received Lifespan Respite grants from ACL. Those states that currently have federal grants or have sustained Lifespan Respite grant activities initiated with earlier grants or are supported by state funding are identified below with state agency contact information. A list of all states granted awards since 2009 are listed in the right-hand menu. You may also want to contact the State Respite Coalition for additional information and respite resources.


Clothing and Pajamas

Adaptive Clothing by JCPenny

JCPenney said its new private brand Thereabouts, which is being released this week, is designed to be an “inclusive line of kids apparel that celebrates diversity of shapes, sizes, styles and abilities.”

The collection includes a line of adaptive clothing that’s aimed at kids with sensory, dexterity or mobility needs. The apparel has features like easy-access openings, sensory-friendly seaming, hidden abdominal access and no tags, the retailer said.

Adaptive Clothing by Target

Target has expanded its clothing options for people with disabilities beyond children with a new collection of jeans and tops in adult sizes. Sensory-friendly and adaptive clothing for adults and children as part of a new line called Universal Thread that’s meant to fit individuals of all shapes and sizes.

Little Keeper Sleepers

A sleeper that is easy for caregivers to get on and off, but not one the children can get out of. Children stay warm at night and ensure no mess to clean in their beds in the middle of the night or come morning.

Pajama City

Find adult size footed pajamas.

Jumpin Jammerz

Find adult size footed pajamas.

Billy Footwear

Smashing fashion with function, BILLY Footwear incorporates zippers that go along the side of the shoes and around the toe, allowing the upper of each shoe to open and fold over completely. Thus the wearer can place his or her foot onto the shoe footbed unobstructed. Then with a tug on the zipper-pull the shoe closes and secures overtop the user’s foot. It’s simple. It’s easy.

Busy Body Kids

Compression clothing started by a Dup15q Family in honor of their busy body, CJ. The compression clothing helps children who are hyposensitive and crave constant input; they love jumping, bumping and crashing activities, as well as deep pressure such as that provided by tight bear hugs and squeezes. Busy Body compression clothing is functional yet stylish. These one of a kind designs were created so children can wear them as under-wear or also as outer-wear and can double as swimwear.  Available in sizes child to youth.

Zappos Adaptive Clothing

Zappos adaptive clothing Functional and Fashionable Products to Make Life Easier


Puddle Jumper

Unique, comfortable, and protective, The Original Puddle Jumper stands out from traditional life jackets while still providing Coast Guard-approved safety. Our high-quality products undertake thorough testing to instill parents with the confidence that their child is well protected.

Aqua Jogger Belt

AquaJogger Jr.’s learn to swim floatation belt does not inhibit arm strokes. It’s designed to provide total freedom of movement so children can focus on the many skills involved in swimming. Supports up to 95 lbs.

SOSecure Containment Swim Brief

Made by by Discovery Trekking Outfitters. An effective and discreet unisex swimming undergarment for adults and teens.

Girls’ One-Piece Swimsuit with Built in Reusable Swim Diaper

Sizes 6 months to 4t

Boys’ Trunks with Built-in Reusable Swim Diaper

Sizes 6 months to 4t

Special Needs Swim Diaper – Reusable Swim Diapers

Swim-sters special needs swim diapers are perfect for anyone who requires a diaper while swimming. They are designed to be worn discreetly under a swimsuit while helping prevent harmful bacteria from entering the water, so they are perfect for individuals with bowel incontinence. Testing results show that Swimsters effectively contain solids and help prevent harmful bacteria from entering the water. Sizing: XS-Size 6/8-Waist:17-24″; Weight: 40-58 pds. S-Size 8/10-Waist:18-27″; Weight: 59-74 pds. M-Size 10/12-Waist: 20-29″; Weight: 75-89 pds. L-Size 14/16-Waist: 21-32″; Weight: 90-118 pds. XL-Size 18/20-Waist: 22-34″; Weight: 119-141 pds.

Splash About Swim Shorts

Adult Sizes XS to XL. No matter the reason for faecal incontinence the benefits of swimming are still the same and with Splash About’s Splash jammers you can swim without the worry of faecal leaks or the embarrassment of wearing an incontinence short or nappy. The enhanced technical design ensures the Splash jammers mould to your body ensuring a snug fit that moves as you move, whatever the activity. Manufactured from high quality, soft neoprene for comfort and secured by specialist ribs at the waist, with the addition of medical grade silicone at the thigh, Splash jammers are the most secure incontinence short in the world, giving you peace of mind every time you swim. Created in sporty unisex colours, these Jammers can be worn alone or under a board short for a leak free swim.

Pool Pal

Special Needs & Aquatic Therapy including reusable diapers, swimwear and flotation devices. The Special Needs products where added as a result of parents and adults calling in requesting a suit that would fit their handicapped child or themselves. The line has been a great success with children and adults with special needs.

Swimmates Disposable Adult Swim Diapers

Swimmates Disposable Swimwear for aqua therapy or any day in the pool. Swimmates are worn under a bathing suit to provide containment for bowel incontinence. The blue moisture-proof barrier provides light urinary incontinence protection prior to entering the water. Inner leg cuffs help contain bowel incontinence, keeping the pool and bathing suit clean. This product is designed to have minimal swelling and does not break apart. Tear-away side seams are used for easy removal and disposal.

Busy Body Kids

Compression clothing started by a Dup15q Family in honor of their busy body, CJ. The compression clothing helps children who are hyposensitive and crave constant input; they love jumping, bumping and crashing activities, as well as deep pressure such as that provided by tight bear hugs and squeezes. Busy Body compression clothing is functional yet stylish. These one of a kind designs were created so children can wear them as under-wear or also as outer-wear and can double as swimwear.  Available in sizes child to youth.



Safe Place Bedding

Portable, inflatable beds provide a safe sleeping solution for special needs loved ones at home or away.


Washable mattress made of non-synthetic material. (Most mattress pads are made from synthetic materials that can raise the body temperature.)

The Safety Sleeper

The tent-like structure is durable, portable and lightweight (under 25 lb.) with additional safety features such as zipper locking mechanisms, enclosed mattress to protect against entrapment, fire retardant material, stabilizing straps to prevent tipping, and frame pads.

Cyr Designs, LLC

The Courtney Bed is an alternative to a standard hospital bed and is hand-crafted from solid hardwood, there is no metal, PVC or any other material used in fabrication.

Privacy Pop

THE BED TENT FOR BETTER SLEEP™ The seclusion solution™ for naptime, bedtime, playtime and alone time


Adaptive Gear and Items

Wonderfold Wagons

Offers family members with special needs a 25% discount on any WonderFold wagon and accessories of your choosing.

Adaptive Mall

Adaptivemall.com offers the best selection of adaptive equipment for children with special needs. Our products range from special needs strollers to special needs car seats to adaptive toys for children’s special needs therapy. At Adaptivemall.com, you’ll find a variety of special needs products for your child’s adaptive equipment needs. Our on-staff therapists and first class customer service team are available to insure your satisfaction with all special needs therapy products and special needs equipment.

Drop Supports

Drop Support harness is a unique, upper body harness that wraps around the user’s waist, chest and torso, with an attached central handle running the length of the torso. The support handle is a point of contact between the user of the harness and the person assisting the user (“assistant”).

eSpecial Needs Car Seats & Seatbelt Guards

Finding the right car seat for a special needs child can be a challenge with certain medical conditions or behavior problems that lead a child to repeatedly unbuckle a car seat’s harness straps. All of our car seats comply with Federal Motor Vehicle Safety Standards that require all special needs car seats meet FMVSS 213 for Child Restraint Systems.

Tadpole Adaptive Equipment

Tadpole Adaptive Equipment provides online shopping and crowdfunding for equipment for adults & children with special needs. Featuring strollers, bikes, standers, bath and toilet, seating,  and beds.

FireFly Friends

Firefly Friends acts as a leading light in the research, design and development of postural care solutions for children with special needs. The Firefly range of products are inspired by ‘special needs family participation’. Explore our range of products for kids with special needs aged 1-16 years. Products ranging from adaptive seats, bath seats,  push chairs, mobility devices, playpaks and more.

Adaptive Tech Solutions

Adaptive Tech Solutions is a therapist owned and operated company and we strive to provide adapted equipment for individuals with disabilities at affordable prices. Adaptive Tech Solutions offers a complete line of affordable assistive technology devices and special needs products to help children and adults with disabilities.

Ultra Quiet Hair Trimmer For Children With Autism And Sensory Sensitivity

This Quiet Hair Clippers has been specially designed for Children with Autism and Sensory Sensitivity. It is Safe and easy to use and can be used on Children 0-12 years old. Ultra Quiet –  Advanced noise reduction technology and high quality brass movement motor to enable this hair clipper to work in low vibration and very low noise about 50dB equivalent to Quiet Suburb Conversation. Special R-shaped designed ceramic blade with 0.5mm gap to the skin to ensure that trimming is comfortable and smooth without harming the skin.


Air Travel

Air Travel Tips

Lots of children affected by dup15q syndrome do well traveling by air, and being prepared increases your chance for success.

Before you go, read a social story about airports/airplanes to prepare your child. Create a picture schedule. See if your airport has a Wings for Autism program. Familiarity will reduce anxiety. Practice using earphones, earbuds or cozyphones. Download apps, music, ibooks, and movies onto devices. Schedule a direct flight if possible. Call the TSA Cares helpline 72 hours prior to travel at 855-787-2227 (8am-11pm ET, 9am-8pm ET weekends/holidays). You can print out your own notification card to present to TSA officer for accommodations on www.tsa.gov. Get a letter from the doctor confirming diagnoses and list of current medications. Bring doctor documentation of disability to get a free National Park Access Pass in case there are national parks/monuments/sites near your destination.  (Or order online for $10 handling fee: https://store.usgs.gov/access-pass)

On the plane, wheel your stroller/wheelchair right up to the plane and gate check it. Preboard when the airline announces boarding for people who need extra time. Bring an air travel approved carseat on the plane if your child is used to traveling with a carseat. It will be familiar and keep your child safe. Some use five-point travel vests. Seat your child next to the window. Bring a backpack with favorite snacks, favorite toys, books, fidgets/sensory items, and iPad with headphones (some recommend CozyPhones or Bluetooth clip on speakers).  “Keeping them busy definitely helps.”  Also bring medicines, diapers/wipes, and perhaps a lap pad and change of clothes. Sit at the bulkhead or have someone from your party sit in the seat in front of your child to minimize annoyance due to kicking the seat.

Car Seats and Air Travel

Did you know Every U.S. airline allows you to check a car seat free of charge when traveling with a child. You can check your car seat at the airport baggage counter or wait and check it at your gate.

Can I bring my car seat on board the plane? If you have a seat booked for your child and a car seat that is approved for use in aircraft by the FAA, then you can bring and use a car seat on board for your child.

Consider traveling with a more compact car seat models.  Check out this list of the best car seats for air travel.

Car seats are obviously not allowed in exit rows (nor are any kids under age 15).  But car seats are also not allowed in any seats where they would block the exit paths of others in the row.  In a single aisle plane with a 3-3 configuration, for example, this means that car seats are for the most part allowed only in the window seats. * Booster seats are not approved for use in planes by the FAA.

For more information check out this website: Carseats on Airplanes: Everything you wanted to know

CARES Child Aviation Restraint System

CARES Child Aviation Restraint System is designed specifically for aviation use for children age 1 and older who weigh between 22 and 44 pounds. These youngsters are old enough to be in their own seats, but are too small for the seat belt alone to protect them and provide the safety they require during airplane travel. Their bodies cannot withstand the jolts that are common in routine air travel, much less emergency situations, and they flail forward or slide beneath the seat belt if they are not held securely in place.


Caregiver posting

Caregiver posting for child with dup15q syndrome


Seizure detection

Seizure detection and prediction devices

While no device has been proven to prevent epilepsy-related mortality (including SUDEP), the Danny Did Foundation has developed a list of seizure detection and seizure prediction devices – as well as other technologies – that are designed to enable intervention by a caregiver. Intervention is believed to reduce the risks that accompany epilepsy. We present these products for further review and investigation by anyone connected to seizure disorders.