In times like these that the Dup15q Alliance is committed to be on the front lines of support for our families.
COVID19 Financial assistance
COVID-19 – 211 Network
If you need assistance finding food, paying house bills or other essential services, use the search bar at the link below to find your local 211 or dial 211 to speak to someone who can help.
Financial Assistance Resources
TailorMed are sharing the most up-to-date information through their Financial Navigation Service. This is a live list that will be updating on an ongoing basis to share any opportunities that arise.
COVID-19 Resource Relief
The purpose of the COVID-19 Resource Relief (CRR) program is to provide financial assistance to individuals living with any disability, diagnosis, or chronic illness to help alleviate the burden of the coronavirus-related quarantines and social distancing practices.
This virus has created a variety of brand new struggles in daily life, many of which are tied to the financial impact of widespread quarantine. One community being hit harder by these new challenges is the disabled community. For many who live with a disability, quarantine is not a choice, but a necessity for survival.
This assistance is provided in the form of one $100 Visa Gift Card to be used for food, hygiene products, and other living expenses associated with self-isolation and quarantine.
NORD Launches Financial Assistance Program for Rare Disease Community Members Impacted by Covid-19
t this time of crisis and with the health, safety and well-being of patients and caregivers as its top priorities, the National Organization for Rare Disorders (NORD®) today launched its COVID-19 Critical Relief Program to provide much-needed assistance to members of the rare community affected by the COVID-19 pandemic. The program provides financial relief that may be utilized to support critical, non-medical needs.
Through the new program, NORD will provide financial assistance to eligible patients, covering up to $1,000 annually. It provides funds for essential expenses including, but not limited to unexpected utility expenses; cellular or internet service; emergency repairs to car, home or major appliances; and rent or mortgage payment assistance. Interested rare disease patients and families can reach out to NORD to find out if they meet eligibility requirements.
For more information on the NORD COVID-19 Critical Relief Program and to apply, please contact NORD by telephone at 203.242.0497, via email at COVID19assistance@rarediseases.org, or visit rarediseases.org. To show your support, please consider making a donation to the program so that even more people can be helped. Finally, to stay informed, the NORD COVID-19 resource center presents information and links relevant to the rare community during this pandemic.
I Stay Home for Rare
The purpose of the I Stay Home For Rare Fund is to provide quick access to emergency monies needed by applicant families and individuals living with rare disease during the COVID-19 pandemic.Aid currently available in amounts ranging from $500-$2,500.
Financial assistance for
- Food, rent, utilities, transportation, and other essential recurring household bills.
- Medical care, medication, treatments, medical equipment and other recurring bills related to maintaining health.
- Childcare services related to maintaining work status and/or physical and mental health for parents and caregivers.
- Necessary items specifically related to pandemic protection such as masks, soap, cleaners, hand sanitizer, etc.
UCB Financial Assistance During COVID-19 Pandemic
We understand some patients are facing hardship due to the COVID-19 pandemic and may experience difficulty affording UCB medicines due to job loss, job furlough, or loss of insurance coverage. Staying true to our core beliefs, UCB is committed to ensuring patients, whose physicians have prescribed our medications, have uninterrupted access to their needed treatments. Contact ucbCARES at (844) 599-CARE (2273) or by email at UCBCares@ucb.com to see if you qualify for medicines at no cost.*
* As we are experiencing higher than normal volume of requests, our response time may be delayed. We appreciate your patience as we work to get back to you as soon as possible.
Autism Care Today
Responding to COVID-19 in Arkansas
Arkansas Community Foundation has established a statewide COVID-19 Relief Fund. Your contribution will be pooled with contributions from other Arkansans to help our neighbors affected by the pandemic.
HOW WILL THE ARKANSAS COVID-19 RELIEF FUND BE USED?
In the short term, the fund will provide rapid-response grants to nonprofit organizations working on the front lines. This critical funding will enable them to maintain operations and support the increased demand for services. In the intermediate term, the fund will focus on addressing the ongoing economic needs of Arkansans affected by the pandemic and shoring up critical systems in our state, such as healthcare, emergency food distribution, schools, etc.
ASF Resources – Autism and COVID-19
The COVID-19 virus and resulting social distancing, school closures and general panic are taking a unique toll on autism families.
Our friends at Autism Science Foundation has compiled this list of resources and will update it frequently.
Dup15q Alliance COVID-19 Announcement
Due to quickly evolving information, recommendations may be subject to change and will be updated as needed.
The 15q Clinical Research Network has prepared these FAQs to address concerns from the Angelman/Dup15q Syndrome communities and healthcare professionals regarding the COVID-19 outbreak.
Elsevier - Novel Coronavirus Information Center
Elsevier’s Novel Coronavirus Information Center Here you will find expert, curated information for the research and health community on SARS-CoV-2 (the novel coronavirus) and COVID-19 (the disease).
All resources are free to access and include guidelines for clinicians and patients.
Under the Research tab, you will find the latest early-stage and peer-reviewed research on COVID-19 from journals including The Lancet and Cell Press. We have also made nearly 20,000 related articles free to access on ScienceDirect. These articles are also available to download with rights for full text and data mining, re-use and analyses for as long as needed.
Under the Clinical information tab, you will find evidence-based skill guides and care plans for treatment, safety and patient education, along with emergency prepared webinars by the CDC.
In the Patient resources section, you can find our 3D4Medical coronavirus video, resources from the CDC and WHO, and information about Elsevier’s Patient Access Program for research.
Global Genes - COVID-19 rare disease resource list
Global Genes has created COVID-19 rare disease resource list to help everyone around the world who is in quarantine or practicing social distancing. This includes government resources, entertainment, opportunities for virtual social interaction and more. We encourage everyone to contribute. Please share your resources with us at email@example.com so we can add to this list, and please share this list with your community.
One way we can overcome fear of the unknown and create a sense of belonging is by sharing our stories with one another. Submit your story using this link for a chance to be published on our website: https://globalgenes.o
Medicaid Rules, Waivers and Changes - Autism Science Foundation
Medicaid Rules, Waivers and Changes from Autism Science Foundation
The Centers for Medicare and Medicaid Services are taking actions to allow more flexibility for healthcare providers, including expanded telemedicine access, to provide services for those covered individuals.
The Kaiser Family Foundation issued a brief on how Medicaid can enhance state capacity to respond to COVID-19, including how they can broaden accessibility and coverage.
Managing Your Child’s Education and Free Time - Autism Science Foundation
Managing Your Child’s Education and Free Time from the Autism Science Foundation.
The Department of Education has published a Q&A focused on providing services to children with disabilities during the coronavirus outbreak, which can be downloaded here.
The National Council on Severe Autism has created an online event for parents and caregivers to share stories, concerns, advice, and questions. Their guest commentators Lee Wachtel, MD, Medical Director, Neurobehavioral Unit, Kennedy Krieger Institute, and Alycia Halladay, PhD, Chief Science Officer, Autism Science Foundation, joined NCSA President Jill Escher and Vice President Feda Almaliti in leading the discussion. Topics included everything from hand washing to mommy guilt during this time. You can view the recorded video here.
The Center for Discovery has shared great ideas for indoor and outdoor activities for families in the time of coronavirus. Click here to view.
The National Autism Association has put together an excellent list of resources including teaching tools for kids, tips for caregivers and how to practice social distancing. Click here for their list.
Interested in taking a field trip without leaving the house? Click here to take a virtual tour of famous museums around the world and here for a virtual field trip lesson plan.
Tips for Staying at Home - Angelman Syndrome Foundation
MARCH 30, 2020
TIPS FOR STAYING AT HOME
Angelman Syndrome Foundation Resource Team Member, Michelle Harvey shares some tips and ideas for staying at home with an individual with AS.
The first thing WE often do when we get to work is check our calendar and see what meetings/obligations we have that day. The predictability of a schedule is important for individuals with Angelman syndrome, too! Keep categories general to allow for slight changes (tv, then, walk, then puzzles, then lunch!), print out google images to aid in visual understanding if needed, and make sure to refer to it throughout the day as you check off each item! Contact Michelle Harvey on the ASF Family Resource Team for help with this.
- Listen to Dr. Jane Summers discuss how to manage difficult behaviors and during this time of staying inside.
This is a clip from a recent webinar discussing COVID-19.
- Shaving cream is great for sensory play and fine motor fun at home! Keep it contained in a baking sheet or pan. Practice writing letters and numbers, draw shapes or pictures in it, or hide legos, stacking beads, etc. in it and go on a hunt!
- Struggling with behavior while at home for extended periods of time? Be sure to explain the behavior that your loved one with Angelman syndrome CAN be doing to get the same result as the negative behavior. For example: “I don’t like it when you hit me. If you want my attention, you can show me gentle and I will talk to you” or “Don’t grab the food when you want more, tell me that you want more” and model asking for more with whatever communication system (AAC, picture symbols, sign language, etc.) they can access!
- Need to get your own work done from home but having trouble with your loved one with Angelman Syndrome waiting until you are done? Use a visual timer app that they can see to designate when your meeting or conference call is over!
- Struggling with physical boundaries while at home for extended periods of time? Use easily-removed painters tape on carpet to designate off-limits areas (such as boxing off the kitchen), or on the kitchen table to designate individual work areas. Explain it to all of your kids, and provide praise and attention while your child with Angelman Syndrome is staying within their area. If they cross a boundary, redirect them with minimal attention and eye contact back to their area, then positive attention when they are in their area.
- During this time of isolation and quarantine several literacy and read-aloud resources have made their sites free for an extended period of time – try Vooks or Epic. These sites animate and read aloud the text with the words on screen, and highlight or emphasize the word being read for greater literacy understanding and word recognition! https://www.vooks.com/ | https://www.getepic.com/
- Create opportunities for inside movement and activity! Watch GoNoodle videos and dance along, do CosmicKids yoga videos on Youtube, or create safe indoor obstacle courses using painters tape on carpet or tile (make arrows out of painters tape throughout different rooms and up and over pillows or beanbags, encourage kids to follow the line throughout the house from the start to the finish!)
- During this time where so much is out of our control, do your best to offer choices when you can – this helps create some feeling of control for our loved ones with Angelman syndrome and decrease negative behaviors that may result from the anxiety of the new situation. Create a page of various activities, then let your loved one with AS pick what to do first, offer a choice of what is for lunch, or even let them pick what room in the house to work/hang out in.
- Tips for transitioning away from screen time at home: as much as you can try to plan for the amount of screen time in advance. Set a visual timer to show when screen time will be over, give reminders of how much time is left and what the next activity is, and don’t go straight from screen time (preferred activity) to a non-preferred activity – a good strategy is to have a slightly less preferred activity first. For example, go from screen time to snack to puzzles/work tasks.
- If you’re able, use this time to work on increasing independence in life skills routines at home. Try encouraging and teaching your loved one with AS the steps to check the mail, water plants in the backyard, or sorting clean laundry before you fold it. When teaching new routines like this, remember that consistency and repetition is key – model the task, explain the steps as you are doing them, give lots of opportunity for practice (check the mail 2-3 times per day if you want!) and remember to be positive and encouraging when they are trying something new! As the task becomes more predictable and familiar, you can start slowly fading away your prompts or physical presence and increase independence!
- Struggling with work or activities from school/teachers/day program to do at home to keep your loved one with AS occupied and not bored? Reach out to Michelle Harvey on the ASF Family Resource Team for ideas based on current goals and strengths! We can brainstorm ideas using what you have at home or can order on Amazon to come up with meaningful and creative schedule and activities based on what is feasible at YOUR house with YOUR work from home schedule.
Tools to Grow at Home
Tools to Grow, Inc. is a place to share ideas and inspire others with engaging print and go resources, activities, handouts, worksheets, and educational material. For a modest yearly investment, your FULL PREMIUM Membership allows you access to thousands of high quality materials. FREE LIMITED Membership offers free access to the same high quality, yet fewer resources.
Members will obtain affordable, yet highly effective and engaging material for use during direct treatment, assessment, consultation, and clinic management. Tools to Grow, Inc. offers comprehensive resources that target the diverse needs of children. This includes skill areas such as fine motor, sensory processing and self-regulation, handwriting, visual perception, visual motor integration, self care, life skills, bilateral coordination, executive functioning, gross motor, keyboarding, literacy and communication, social skills, and student fieldwork.
Tools to Grow, Inc. is an innovative membership-based website unique to the field of Pediatric Therapy. Prolonged and time consuming searching for resources will be a thing of the past for our members! Members will gain comprehensive caregiver and staff resources when collaborating with others and managing their caseload. This includes assessment checklists, documentation shortcuts, response to intervention records, early intervention, and school based curriculum.
https://www.toolstogrowot.com/free-therapy-resources/sort/date-newTherapy at Home
Webinar: 15q Clinical Research Network discuss COVID-19.
Dup15q Alliance and An