Life Hacks for MWS families

Released December 1, 2021

Double-wrap your child’s bed

If night time accidents tend to happen in your household, the, this hack is for you. Put a mattress protector and then a sheet over it. Then, put on another mattress protector and sheet. If your child has an accident, you can simply peel off one layer and voila! – you have another clean one!

 

Pack an ever-ready bag

Small drawstring backpacks are perfect for this. Keep a small bag in a drawer or on a hook near your front door. Keep the most important necessities in them – and perhaps a couple of extra things. If you have an emergency or need to leave quickly – you have a bag ready to go that you can grab on your way out the door.

 

Silverware on-the-go

Keep a set of extra metal silverware (including spoons) in the glove box of your car. Plastic utensils can be very problematic if someone with MWS bites down very hard. You can keep 2 Ziploc baggies – 1 for clean silverware and 1 for used silverware.

Caregiving Corner

Released December 1, 2021

The MWSF Community Advisory Board would like to share some information about connecting to resources:

Since 2006, the Case for Inclusion has been a leading source for data and policy recommendations regarding the effectiveness of state Medicaid programs in serving people with intellectual and developmental disabilities (IDD) and their families.   This website provides information about Medicaid services by state – however, some of the information may be outdated.

Military families can access assistance through the Exceptional Family Member Program (EFNP)

This program helps families connect with services This program may offer as much as 40 hours of supplemental nursing a week and 40 hours of respite per month. Tricare ECHO provides financial assistance to beneficiaries with special needs for an integrated set of services and supplies. Families must be enrolled in the EFNP to qualify. Tricare Select allows family members to choose their healthcare providers. These programs are very helpful, but it can be difficult sometimes to find providers that accept Tricare.

Very often, the pediatrician refers the family to Early Intervention services – and this program provides access to a wide variety of services and social workers. Generally, a pediatrician can provide a referral for any child not meeting milestones.

A geneticist or genetic counselor can be very helpful and supportive advocates for getting access to home-based care.

It has been pretty easy for some families to access home-care services in Virginia through the Medicaid Waiver Program. It has been difficult for some families to access home-care services in Mississippi – there is an 8-year waiting list for the waiver program. In Mississippi, without the Medicaid Waiver program, Medicaid only pays for healthcare visits. Sometimes there are no local providers or there is no children’s hospital nearby, which may mean long drives for healthcare visits

Massachusetts provides for 30 hours a week for a Personal Care Assistant (PCA). The PCA can be a family member. Keep in mind that some of the care aspects may be difficult for older adults to physically be able to perform. A company can be used to provide the PCA, if there is one in the area. One disadvantage is that the family has no control over who is hired as the PCA and less control if issues arise such as the individual not arriving on time and their level of trustworthiness. When a company is used, the PCA receives training. The Shriner’s Hospital in Springfield is reported to have great social workers.

A PCA is different from a Direct Support Professional (DSP). Click HERE to learn about this difference.

The 3 MWS Facebook groups can be very helpful if families need information about services and what is available in each state

It is important for caregivers to take time for self-care. Caregivers need to be able to share their feelings. Caregivers should also feel comfortable reaching out to others, especially other MWS families in the Facebook groups who know what you are going through. Don’t be afraid to ask questions and seek advice. A wealth of information is available from other MWS families

MWS Family of the Month – the Andrews Family