Ice Cream, Moving & Covid Concerns

Welcome to the last full week of January. And the beginning of a new administration in Washington, D.C. Here’s hoping for more unified efforts to serve individuals and families with disabilities…perhaps starting with improved vaccine distribution to combat the spread of Covid19. As one bright star of last week’s innaugural festivities said so eloquently:

If we merge mercy with might, and might with right, then love becomes our legacy and change our children's birthright.

— Amanda Gorman

Give it a shot. 

Despite shortages and hold-ups nationwide, Covid19 vaccines are now available in many states to home health care providers.  This is good news for the thousands of families nationwide who require assistance caring for growing and adult children in their homes.  But it also presents a question:  can you mandate the vaccine for your home health care employees?  This interpretation of employment law says “yes,” which is especially good news for parents who are still unable to get their loved ones vaccinated.  Ohio opens up vaccination pathways for people with intellectual and developmental disabilities (I/DD) this week. The state of Connecticut, however, says most home-based residents with I/DD will likely have to wait until March for their shots. In the meantime, health care experts recommend diligently enforcing safety protocols within your home for PCA staff and family members of loved ones with compromising medical conditions.  Frequent handwashing, constant use of masks and social distancing, and regular testing for the coronavirus are all essential to reducing the risk of transmission.  It’s been a long ten months, but hopefully the end is drawing near.

And…action.

Here’s the trailer for an award-winning new documentary that provides perspective on living in fear of Covid19.  26-year-old British filmmaker Stephanie Castelete-Tyrrell navigates life with a rare form of muscular dystrophy.  The movie documents her challenges in lockdown and highlights the pandemic’s impact on family caregivers, as well.  Our 24-year-old son with cerebral palsy agrees that the loneliness, isolation and depression can be really difficult – no matter how positive an attitude you try to have.  “I wanted to make sure people’s voices were heard and that the disabled community would not be forgotten,” says Stephanie.  If the trailer is any indication, she certainly succeeded.

Crossing state lines.

Moving from one state to another when you have a child with disabilities (no matter what age) is daunting at best. (Trust me, I know.) Medicaid and other government benefits don’t automatically transfer, and waiting lists for waivers and other necessary services can be miles long.  Parenting Impossible, a podcast for special needs families, examines these challenges and provides guidance on how to best prepare and proceed if this is something your family is contemplating.  

Virginia might be worth considering, now that the state has instituted special sexuality education for students with I/DD.  Such a move clearly supports the importance of this topic, which should be included in IEP discussions and course-mapping for young adults with disabilities.  

Please join us February 17 from 7-8:15pm for a free webinar on Sexuality and Developmental Disabilities to learn more about how to best engage with your son or daughter on this sensitive subject. 

Register Here

Two scoops, please.

If you’re lucky enough to travel south this winter, be sure to check out  Rise & Nye’s Ice Cream and Coffee Shop in the heart of downtown Sarasota, Florida.  The social enterprise is partnering with several non-profits, including Easter Seals and Inclusion Revolution, to provide meaningful employment to young adults with disabilities.  I love how they’ve created virtual reality simulation videos to reinforce job skills development and serve as a refresher tool for employees.  Now that’s what I call making learning fun!  And delicious, too.