“They are living a life of hell without purpose or choice.”
Recent photo of holes in the walls of the twins’ Pennsylvania group home.
By Jody Weaver
Our sons Matt and Dan are 27 year-old identical twins with severe forms of autism. They have lived together in a residential group home for the past five years, with each year becoming worse.
They have experienced increased anxiety, aggression, self-injurious behaviors, weight gain, depression, rages, increased medication use and overall poor health. They have endured living in the community in a cul-de-sac with neighbors who resent their presence. Countless police calls and ambulance rides to the ER. Both Matt and Dan have become isolated and traumatized. In general, they are living a life of hell without purpose or choice.
But it wasn’t always this way.
Before they aged out of school, they were safe, confident and happy in a Camphill residential farmstead-based learning program. They lived and worked with peers and coworkers growing organic food, caring for animals, learning trades and living an authentic purposeful life. There was no feeling of isolation and fear and often immersed in nature, which met their acute sensory needs. They had room to explore and be themselves and enjoy what nature had to offer.
But this all ended at the age of 21.
They “fell off the cliff” and into Pennsylvania’s nightmarish adult system. Our state has one of the most restrictive interpretations of the Medicaid HCBS Setting Rule. This means that instead of having a choice that meets their need for structure, purpose and outdoor space, a small group home setting became the only option.
This has meant churning through several different homes, endless hours trapped in houses watching TV or lying in bed, poor food choices, hours of van rides or maybe a walk in a mall or around a neighborhood. They have hated it since day one and their behaviors have shown it.
They have demolished several houses multiple times. They have destroyed rooms of furniture, kicked countless holes in walls, pulled cabinets off walls and flushed so many items down the toilet that the plumbing backed up and flooded the house. The worst part of these increased behaviors is that they have physically injured and hurt staff. Staff have sustained many hits and blows to various parts of their bodies, bite wounds requiring up to 20+ stitches, broken arms and noses, fractures, ripped clothing and broken glasses, and worst of all, one sustaining a mild brain injury.
These aggressive behaviors reflect just how frustrated, depressed and unhappy they are in their current situation. How do I know this you ask? Because our home has NEVER encountered any destruction or holes in walls by either of them. No items have been broken, ripped or destroyed. The four of us go out shopping together and eat in restaurants without any issues. Occasional behaviors are addressed and redirected and we persevere as was the case during their time in the Camphill environments.
Now their behaviors are interpreted as their fault and they are sent to be locked up in a hospital room by the very system that is supposed to serve and protect them!
But what are the alternatives? We are unable to care for them at home, and Pennsylvania has erected nothing but roadblocks to other options. As hard as we have tried to find or create a program suitable for our sons, Pennsylvania’s answer is always “no.”
Per congressional mandate, Medicaid Home and Community Based Service (HCBS) dollars are supposed to pay for services to support severely disabled adults like Matt and Dan. There is nothing in the legislation or regulations that restricts those options to “small group homes.”
Pennsylvania’s implementation is so restrictive that it will not allow HCBS recipients to live and work at the same address. It will not allow congregate settings, even for those who benefit most from an open and roomy setting with peers. Also, it arbitrarily prohibits rural settings. They call them “isolating” when in reality, our sons have never been so isolated as they are now in this group home.
Now, our sons’ terrible situation has become even worse.
In October 2020, Matt and Dan transitioned from one group home to another with a new agency. Within the first 13 days, 911 was called 17 times due to a crisis situation with Dan. Each time, Dan was severely head banging on walls, furniture, door frames, tables and headbutting staff. He was engaged in aggressive behaviors, excessive property damage and was considered a safety risk to himself and staff. He was taken to the Hershey Medical Center Emergency Department and locked up in a Psych holding room under observation. He was held under a 302 for a total of 13 days waiting for an inpatient hospital placement.
We were told by hospital staff that he went unattended because he had aggressive behaviors: when we visited he was not bathed, not shaved, hair not washed, teeth not brushed. Vomit matted his hair and he was often severely dehydrated. We bathed and cleaned him up at each visit and brought him food and plenty to drink. Finally, after three weeks, we could no longer watch him deteriorate in that locked empty cinderblock room! We took him home with us and declined any further inpatient waiting list.
During Dans’ time home with us, his entire case management team (parents, agency, ODP, county, licensing, etc) has been meeting every Friday via Zoom to discuss the situation. After two and a half months, the team decided it would be good to slowly begin to transition Dan back to the group home.
Around this same time, Matt also had aggressive behaviors and ended up in the same Psych room at Hershey on two different occasions for several days. He too exhibited dangerous explosive behaviors with excessive property damage and aggression towards staff. Matt was able to transition back to the group home after both incidents, but is having difficulty managing his anxiety.
Last week Dan returned to the group home for a brief three-hour visit with his brother and to have dinner together. Within one hour of dropping him off, he became so violent against himself and staff that four police cars were called to the scene. An ambulance arrived and strapped him in a gurney and once again transported him back to the same locked room at Hershey.
We arrived at the group home just as the police and the ambulance were arriving. What transpired was a nightmare. There was a tug-of-war between a staff person and Dan with a large crock pot that had been cooking a roast for about six hours, filled with hot liquid. There were many frozen bags of vegetables taken from the freezer and beaten against the cabinets strewn across the kitchen floor. Many broken hard plastic dinner plates smashed throughout the dining area. Multiple holes in the walls throughout the house. Staff was assaulted repeatedly, while trying to use pads to intervene.
Dan yelled “No, no, no” and “Mommy, Mommy, Mommy” as they loaded him into the ambulance.
On the following call, Dan’s team recognized it was not safe for him to return to the group home nor our home given his recent behaviors. The group home provider went over Dan’s history of violent behavior and said they were afraid he would eventually seriously hurt himself or someone else if he returned to the group home. The provider even asked the question if they would be held liable if Dan seriously harmed himself. The question was asked in which setting would he be most appropriate and the provider answered, “a farmstead or lifesharing community.”
Ashley Kim Weiss, national coordinator for the nonprofit group Together for Choice, pointed out that CMS’s HCBS Settings rule does not prohibit disability specific settings and Dan is regressing and endangering himself and others because Pennsylvania is forcing Dan to be in a setting that does not meet his needs.
Some people on the call tried saying that the federal rule prohibited disability-specific settings, but Weiss shot back that this was untrue. She feels at some point someone should be held liable for all the human trauma caused by PA’s misinterpretation of the Settings Rule.
Pennsylvania’s extreme and unfounded interpretation of the Settings Rules is a mockery of the “person-centered planning” process that the HCBS Rules require. Now, one or possibly both of them face being institutionalized. How is this not a violation of their civil rights? Pennsylvania is actively harming the same group of people it’s supposed to serve and protect using our tax dollars via Medicaid.
We desperately need to expand options for community living that meets the actual needs and choices of those with severe autism.
Jody Weaver is the mother of two sons with severe forms of autism. She lives in Pennsylvania.