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

The National Organization for Rare Disorders (NORD)Ⓡ, the leading independent nonprofit organization representing the 25-30 million Americans living with rare diseases, has launched the Rare Caregiver Respite Program, a first-of-its-kind program aimed at providing caregivers of rare disease patients a much-needed respite. Initial funding for the program was donated by Retrophin (NASDAQ: RTRX), a biopharmaceutical company specializing in identifying, developing and delivering life-changing therapies to people living with rare disease, in honor of its former CEO Steve Aselage’s retirement from the company.

State Lifespan Respite Grantees and Programs

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.

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.

Caregiver posting for child with dup15q syndrome


Seizure detection and prediction devices

While no device has been proven to prevent epilepsy-related mortality (including SUDEP), the Danny Did Foundation has devolped 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.