My Experience Working with Individuals Diagnosed with I/DD in a Residential Facility
Jane Addams, Founder of the Social Work Profession
Ten years ago when I first entered college as a non-traditional student, I knew I wanted to be a social worker. Well, actually a long time before that, but let me explain what confirmed my decision. We had just purchased our first home and exactly one month later, I lost my job. My family and I were going through a rough financial patch and the poor treatment I received at the local job and family center gave me the ambition I needed to help other people down on their luck, whatever the cause may be. Being humanitarian and informative both came natural to me, and nothing gave me more pleasure than to be helpful to someone because of all the support and information I never received along the way, not to mention they way these agencies made me feel. I can't remember ever leaving these places and not crying my eyes out because of they way I was criticized and judged for even wanting to step through their doors, looking at me with the old stereotype of a person freeloading their system and not thinking about my family's future. Determined to be the catalyst for positive change, I enrolled in the local university for twofold reasons; to further myself and to help others. However, I never imagined in a million years I would be applying my efforts in the capacity I am: working with adults diagnosed with I/DD, or intellectual and developmental disability.
Don't get me wrong- I absolutely love this population! It's just sometimes I truly don't feel I'm "supporting" them to achieve their goals, and in fact, hindering any possible successes because unfortunately, my state's Department of DD and their Medicaid program have conflicting ideas about how we should support our consumers, how we should teach. In the past, both entities allowed for some carefully reviewed and approved restrictions to be placed on clients that I believe encouraged them to behave appropriately, as well as learn the "right thing to do". Such plans included token reward programs for good behavior (least restrictive) to taking away desired activities for bad behavior (moderately restrictive), down to physically blocking and/or using chemical restraints (most restrictive) for physical aggression. And believe me, there are a few out there that could literally beat the crap out of you! And then suddenly last year the Department of DD implemented some policy changes and stepped in and reinforced the fact that "it's their right". I totally agree with this statement in theory and somewhat in practice, but not to the extent of NOT ensuring their health, safety or welfare. For example, if a client has full-blown diabetes I don't think it's in their best interest to eat half a chocolate cake in one sitting. Or even without diabetes, it's just not healthy to stuff yourself with 13 cans of soda, 17 suckers, 8 string cheeses, a whole bag of hard-tack candy and an entire box of brownie snack cakes IN ONE DAY. With that being said, all we can do now is "encourage" them not to do it. The ideology of this is that a consumer can make their own choices regarding basic human rights, thereby experiencing direct natural consequences (either good or bad) as a result. The repercussions of eating that much food is weight gain and a terrible belly ache! And for the diabetic, an extreme increase in glucose levels which could send them into a diabetic coma. Why doesn't the DODD understand that many of these folks tend to live in the moment, not thinking about these natural consequences the next day while they're eating all that junk again? It's been about a year since these changes were implemented but if you ask me (or anyone else working with these clients), their behavior is clearly off the charts. We were told this would happen in the beginning of these changes, but it's still going on and in some cases, getting worse. And I worry about them.
Who Doesn't Love Food?
Food is probably the greatest motivator for some. It's not uncommon to see quite a few that's gained around 50+ pounds since these changes took effect. Each facility is allotted a certain amount of money each week to spend on groceries, but food's not lasting for meals. Clients are stealing snacks, sweets and soda from the refrigerator, each other, and even from their staff. With no consequences. A few are screaming and yelling, cussing and hitting if they don't get their way, disrupting their peers and their homes. Other clients see this happening and follow suit because they know they can with no repercussions. All we can do is "encourage" them not to behave this way. It's likened to the old saying, "Like a kid in a candy store". So we should let them chain smoke outside in temperatures below 20 degrees, all day and all night when WE, as managers and staff of an intermediate care facility (ICF), are liable and responsible for making sure they don't pose any threats to their own health and safety? Even medical recommendations don't carry much weight anymore. It's all a dignity of risk issue.
Like I said earlier, I'm all for advocating their assertion of basic human rights because they are just like you and me with the same feelings and emotions, universal human urges and similar wants and needs.They experience joy and sorrow, happiness and sadness in many comparable ways. Maybe a large part of their behavior patterns stem from how they were reared as children, or maybe they had been taken advantage of in the past, possibly abused or neglected, or perhaps they're learned behaviors. And most of these were likely since evidence indicates these types of incidents occur at much higher rates within this population. There can be multiple dynamics at play here, but the real challenge is teaching them to positively change, or giving them the tools to modify these inappropriate behaviors. And that's where I come in.
All Disciplines Meet to Discuss Changes
As a Qualified Intellectual Disability Professional (QIDP for short) part of my job is to create and develop programs that will help consumers learn and grow toward self-sufficiency and to prepare them to live on their own in a community setting. These programs are a main component of Medicaid's requirements for individuals who live in ICF's, and a large element of what separates an ICF from a long-term care facility like a nursing home, hence the name "intermediate". In addition, another requirement for living in an ICF is that an individual must be diagnosed with I/DD. But not to get off subject... Writing these programs can be creative, sometimes very detailed, and always based on areas of need. Once a year, every consumer has an individualized service plan meeting (ISP) across all disciplines to discuss any changes or modifications needed in their current plans, and which are mostly based on the assessments completed by their personal staff. And with these changes, it's become more of a challenge to come up with a behavior support plan that will truly assist them in learning alternative behaviors. One of the least restrictive type of broad plans we can use is called "positive reinforcement"; this is where we as managers and staff "praise and encourage" them for tasks they are supposed to do, such as completing their daily chore list or when they handle a conflict with a peer without blowing up. Yes, this is an evidence-based intervention and it does work to an extent, but what if they decide they don't want to sweep the floor? We say nothing as there's no consequence here, nothing to reinforce. And when they do blow up at their friend? We tell them "thank you for controlling your temper and not hitting them", or whatever positives we can find out of the situation. Sound crazy? "Planned ignoring" is another type of positive reinforcement. This is what we do (ignore them) when they start cursing and yelling at us because they asserted their right to do things their way instead of accepting our advice, and as a result are experiencing the natural consequences of their decision. How is this teaching if we cannot guide them with some type of repercussions? Do we not ourselves face negative consequences from law enforcement if we decide to physically assault another person?
Catalyst For Positive Change
In my State, most behavior support plans will be a thing of the past this coming summer. The only ones to continue will be plans that are absolutely needed to ensure individuals are not putting their lives in direct and immediate danger or harm (which are needed for a minuscule minority). However, I'm very concerned about the ones currently on a behavior plan because at least we're giving them some kudos for the things they are positively accomplishing. With that being said, how can I assist this population in the near future? Actually, my best answer to this is just talking with them, understanding their thoughts and feelings, and trying to connect with them. Sometimes it just takes another person to be there and listen, give advice if asked, and provide them the dignity and respect inherent in all human beings. That my friend, is the greatest catalyst for positive change.