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  • Writer's pictureMichael Pearce

Separated From Your Son or Daughter with Special Needs

Group homes and residential facilities are STILL not allowing parents to visit after seven months of isolation

Stephanie Kirby holds a photo of her son Petre Kirby outside of the Denton State Supported Living Center in Texas, where her son is a resident. She hasn't seen him since March because of COVID-19. Credit: Ben Torres for The Texas Tribune

The COVID-19 crisis has adversely affected people around the world. The adverse affects seem unparalleled in human history, with many drawing the comparison between COVID-19 and the Spanish Flu of 1918.

The majority of us understand to various degrees why we are not having big gatherings and why the lockdown happened in the first place. But another large portion of the population may not comprehend what happened to life as they knew it, and why they cannot see the people who love them.

In Texas, individuals living in supported care facilities have not seen their families in-person since the lockdowns began in the spring.

It is almost Halloween. Severe restrictions have made it impossible for even one parent to have a face-to-face visit with their adult child with special needs.

Parents are making daily efforts to change the restrictions so they can be reconnected with their beloved children. But until there are "no cases" of COVID-19, according to Governor Greg Abbott, no visitations will be allowed to happen. Residents cannot leave, and parents cannot visit.

There are 13 state-supported centers in Texas which together provide housing and services for some 3,000 people living with developmental and/or intellectual disabilities. While nursing homes and some other long-term care facilities reopened for visits last month, under strict guidelines, these dorm-style, state-supported centers have not.

To make things worse, according to Kelli Weldon, a spokesperson for the Health and Human Services Commission, not one of the 13 centers had applied for any family visitation as of Sept. 3.

Texas has been promoting video visits and supposedly set up a pen pal program for residents of the state-supported living centers. But, as special needs parents know all too well, video visits and phone calls simply do not work and are not a substitute for in-person visits.

People living with developmental and/or intellectual disabilities need human connection. They need the regular and routine get-togethers with their loved ones. Some have been suffering greatly without the connection, and many (as parents are afraid) don't understand why they cannot see their families.

“I can understand COVID. I can understand what happened,” said Stephanie Kirby, mother to 28-year-old Petre. She has seen him in person just three times in the last seven months.

Kirby says she's not upset with the center; she believes they are taking care of her son. Her concerns regard the restrictions and the possible negative emotional effects on the vulnerable residents like her son.

She worries “there's no way he could ever understand why his mom just never came back.”

Families throughout th U.S. who are facing this issue are concerned not only about the mental, social, and emotional effects of this relentless isolation on their children; but also about the ongoing and consequential lack of oversight that parents provide to keep their children safe in such settings.

Others lament all the missed celebrations: sons or daughters living in these residential facilities who have had birthdays with no family present; holidays "celebrated" with a two-minute FaceTime or Zoom session; illnesses occurring with no mom or dad to provide reassuring hugs or warm bowls of soup delivered with a mother's touch. Remote touch simply cannot replace human touch.

The isolation and loneliness of constantly living without ever getting to go home and never having parents visit is leading to anxiety and depression for residents and parents alike.

There is, obviously, no telling when the virus will disappear, which means in Texas, and other places across the country, there is no telling when individuals living in residential care centers will be reunited with their families.

So, quite unfortunately, the affected residents and their families are in limbo with no end in sight. Obviously, there is no single solution. The problems are complex.

Families in this situation can't afford to stand idly by and wait for things to resolve. It should be clear by now that Amazon Prime is not going to magically show up on our doorsteps with a solution. 

So, do we just sit around and wait for things to change?  When things do change, what will the "new normal" be like? 

Not knowing the answers makes planning for the future seem like a futile exercise, because no one really knows what they are talking about when they say "the new normal."  That's like saying you know what things will look like in the afterlife.

There isn't going to be a cure-all solution provided by the government or school or Google. What special needs parents need are tools to help them take back control of their lives while ensuring the best care for their children right now.

Does Vest solve the current problem of familial isolation? No, of course not.  But when you really dig down deep into your heart and think about it, there's no greater isolation for your child than when you are gone from this earth and all the knowledge you have about your child isn't there for anyone else continuing their care.

So, instead of just standing idly by, we suggest that you focus on the things you actually can control and improve.

Like making sure others will know what to do for your child's care when you can't be there. Vest allows you do that. Vest is your digital dashboard for storing the lifetime of knowledge and insights you have painstakingly accumulated over decades with every tribulation and success you experienced.

In the face of tumultuous times such as these, maybe there's a little bit of peace of mind which can be gained from knowing that Vest has your back and will help you navigate special needs, now and in the future.

We want to give a special thanks to two people who really care and who inspired this post: ARIA JONES AND SHANNON NAJMABADI


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