Thirty five years ago, when Justin was born, shortly after PL.93-122 was written and shortly before PL 94-142 was implemented.   Rights for disabled were passed.

Deinstitutionalization was beginning to be reality.  Children with disabilities would be kept at home and services and programs would be provided with the help of the FEDERAL government through local governments.    Rights were provided, but of course, not enough funding.

 I struggled, lobbied and helped develop early education and respite care services that he and I needed.   I taught other parents their rights and responsibilities.  I advocated for his public school needs and funding.  Including, making sure public school teachers had enough help for inclusion.  There was no “family leave” program for parents.  

During the time I was working on and coping with early education and public school education, I ran into a lot of parents of older disabled children, (over 21) and their challenge to find safe and appropriate, “least restrictive” group homes or other facilities for adults with disabilities.  In fact, they were somewhat resentful of all that was being done for younger children and very little for their adult children.  I wasn’t there yet, so paid little attention.  I had this “cute”, “special needs” young son.  Everyone wanted to do what was best for him and he got great services for the most part.

Fifteen years ago I started to understand the concerns of parents of adult children when Justin entered adult living programs.  Magic City was his first provider and they promised great things for Justin.  His first house was a bi-level that was certainly not accessible for the physically disabled.  Justin struggled with the stairs and lack of appropriate bathroom facilities.  There were 4 to 6 other residents in every home he has been in since that time.  Staffing was always a problem and often I found only one person on duty with all 4-6 residents. Most staff were paid minimum wage or slightly above.  We fought to get Justin appropriate staffing for his needs and then his staff was used to support other residents. 

Justin was in good health and appropriate weight when he entered the program.  He did not have a behavior diagnosis then as it was not a major problem.

Shortly after Justin entered the adult programs, he started having inappropriate behaviors.  It was obvious that he was not able to get his needs met and did not feel safe and secure in this situation.  He developed behaviors to get attention to compete with other residents.  Some of the residents had very disruptive behaviors and it became very competitive to get attention and to be heard and feel safe.  As his behaviors escalated, Magic City made excuses and requested a behavior diagnosis to assure adequate staffing.  Staffing was rarely adequate for level of care needed in these homes and Justin’s diagnosis provided additional staff, but was never used appropriately, but rather used to staff the homes in general.  Many of the staff were not physically capable of making Justin feel safe.  His 6’4” height and weight gain to 250 lbs., required staff with physical strength to help him in and out of a standard tub, chairs and to help him ambulate.  Hardly ever, were staff capable of helping him physically, except for an occasional male who was able to give him confidence, that someone was there for him that could keep him safe.

Justin was then placed with more and more aggressive and severely behaviorally disordered and his behaviors increased with that placement. I agreed to those placements as a result of being told that was his only choice or I could find another provider.  It was a threat because they know how much work and how hard it is to find and change providers.   He became more and more disruptive and demanding and acted out through extreme behaviors.  He was getting more and more frustrated and angry.  He directed his anger toward things and not people for a long time and then eventually developed more behaviors directed at people.

He also became more and more stressed with living with severely involved residents who would come into his room and hit him and threaten him.  He learned how to survive in these scary and unsafe living conditions. 

I became labeled as a “problem parent” pointing out these problems with staffing, inaccessible facilities, his health and safety.  He also gained a great amount of weight, was given additional diagnosis and prescribed behavior control medications and mood disorder medications he had never been diagnosed before entering group homes. 

With this lack of appropriate staffing, he became more sedentary and eventually was almost completely limited to a wheelchair.  It was easier to restrict his movement than provide safe conditions with staff that could manage his size and weight.  He began falling more and of course, he became more and more obese and was then prescribed full time oxygen to cope with the increasing health issues.   Side effects of medications were also causing more problems  such as dizziness and increased instability. 

I watched him regress into a person I had never expected or seen.  I was heartbroken and continued to work to get him a safe place.  Magic City decided to get a full evaluation and Justin was sent to Evanston and Mountain Regional for a full month assessment in 1997.

He was then placed with MRSI when they moved to Cheyenne and many promises were again made by them for his care and again, staffing was inappropriate, he was placed in a home with 4 to 6 clients of varying severity of disabilities.  His behavior again escalated and he was medicated again and again.  He would be placed on 72 hour restrictions that he was hardly ever able to avoid.  Neither Magic City nor Mountain Regional provided him the least restrictive environment and in fact, provided an environment for him that only escalated his problems and disabilities.  Residents would feed off each other and tease and escalate their behaviors until they got enough help.  Some of the placements with Justin were very involved with no language, only screaming and noises and disruptive behaviors.  I doubt many of us could live with one, let alone two or three other individuals with these issues.  He was scared and frustrated.  Could you blame him?

In 2007, I chose to place him in a “host home” environment with only 2 clients in the house.

He did well for a while, but then again, staffing was an issue and often Justin was in the community with only one staff and there would be an incident and Justin would be left alone with the general public while staff got a car or addressed another issue.   Not feeling safe, Justin would encourage by-standers to get him help, through asking them to call 911 for an ambulance or whatever he thought would help.  These incidents happened frequently with Magic City and Mountain Regional.

 Justin requires two staff to take him into the community to provide for his physical safety due to his size and health issues.  One person cannot safely get him in and out of cars, buildings, unleveled ground, stairs and other community integration situations.

The host home situation he is now in, has male staff able to address his mobility issues and safety.  He is not in a wheelchair all day at day hab or at home.  He exercises daily.  They have gotten him walking again, he has lost 32 pounds and is not on full time oxygen and has not had a reportable behavior in over 8 months.  He is still somewhat limited in his ability to be in the community when he has only one staff to help with his safety and logistics.  He does not have roommates that have behaviors that are difficult to cope with and encourage disruptive behaviors.   And for the first time in 15 years he has an accessible bathtub that is appropriate for him. 

Magic City and Mountain Regional both after many years and occupational therapists recommendations for adaptive bathtubs, ignored those recommendations and put in “roll in showers” that always leaked and were not available for his use most of the time.  Interview past staff of both agencies and find out how sad and difficult is was to watch Justin try to get safely into a standard tub receiving bruises and injuries.

Justin is much happier and finally feels safe in his own home.  Isn’t that the goal of all of us, feeling safe in our own home?  It was living in an abusive home with no way out for many years.   MRSI provided counseling to cope with those fears created by his living conditions. 

He is not appropriate for large, low level, trained, staffing and residents that are non-verbal, physically threatening and not cohesive with higher functioning residents.

 Justin deserves more independent living where he can go where he wants and do what he wants and not be dependent on adequate staff and the behaviors of other residents.  We have the proof; look at his previous placements and his placement now and the drastic changes in his abilities and disabilities.  Now it is time to look at how to keep this “least restrictive” environment and to never let what has happened to him in the “group home” situation, ever happen again.

You need only look at the records and the progression of the problems in his previous placements and where we are today.  He is going back to being the person he was before group home abuse and placement. He has lost weight and has had no destructive behaviors since his placement in a host home.   It is time to assure the disabled that they will be placed in appropriate living conditions and not just warehoused at the convenience of the agencies involved.  That was not the goal of deinstitutionalization.    Justin should never been put in many of the positions he was, that escalated his disabilities and medial diagnosis.

With escalating autism diagnosis, it is time to do the right thing now and pay staff appropriately to provide non-abusive services in least restrictive environments.  Mini-institutions are not least restrictive, just smaller institutions.