Besides providing basic health information, this document can be utilized to convey important social information that facilitates knowing and understanding a person.
https://replacingrisk.com/downloadables/HRST-Health-Passport-Fillable-PDF.pdf
https://replacingrisk.com/downloadables/HRS-Inc-Special-Bulletin-2.pdf
https://replacingrisk.com/downloadables/HRS-Inc-Special-Bulletin-1.pdf
CMS’ final rule on Person-Centeredness has created many conversations among those who support people with Intellectual Disabilities (ID). Some center on compliance, paperwork, and measurable outcomes. These, while relevant, miss the spirit.
So, what does it mean to be Person-Centered? Is it about language, or community integration or choice and responsibility? The answer to all, is yes. While Person-Centeredness is a significant shift in how we approach supports, it’s really pretty easy to understand.
The spirit is really about treating people with ID like, well, people.
When we talk about people with disabilities, we still use clinical language even when they aren’t in clinical settings. We say things like, “Stacey has verbally aggressive behaviors, but she is high-functioning. She toilets independently, enjoys outings, needs partial physical support to do math, and requires verbal prompts for personal interaction.” What if we talked about Stacey like we talk about a friend? “Stacy speaks for herself. She is a lot of fun when going out but appreciates a kind reminder to respect others’ space. When making purchases, her friends help her make sure everything’s correct.”
See the difference?
When we think about community integration for people with ID, we often approach it like students on a field trip. While group trips can be fun, what if we also helped a person with ID get and stay connected with a local artist, musician, or baseball coach?
When we think about balancing choice and risks for people with disabilities, we may lose the balance we would ordinarily pursue such as when helping a friend. We may protect people from any risks leading to lives that are safe but are miserable and limit their growth. Or, we may not offer direction, thus putting people at significant risk and sanctioning reckless choices. What if instead we provided direction but not control, to help people make informed decisions, even if those decisions led to mistakes from which they could recover and grow, just like we do for our friends?
No doubt: paperwork will follow, compliance will be required and outcomes will be measured but let’s not forget that Person-Centeredness is about treating people like people, and that is the right thing to do.
And remember, person-centeredness is not just for those with IDD. It is applicable to anyone who for any reason has lost ownership or positive control over their lives. This could be because of an acquired disability, accident, the aging process, and so on. When supports are needed from others, person-centered approaches help ensure the person stays in control of their life as much as possible.
Last month, we talked about Physical Supports and the concept of supporting a person 24/7 to achieve better health. In this month’s article, we’ll touch on Nutritional Supports. I credit HRS founder, Karen Green McGowan, RN, with enhancing my knowledge about this important way of support.
Few people with intellectual and developmental disabilities (IDD) are born with bony deformities. This is more often a function of failing to initiate the battle with gravity that begins with spinal shaping from a belly-down position. If, instead of moving the head and spine against the opposing force of gravity that normally changes the spine from a big C into an S curve, the person remains on their backside with little active movement, the body will take a new shape that reflects the primary pattern of movement. The head and spine will often flatten and reshape into scoliosis, kyphosis and a flattened chest. These deformities can interfere with normal bodily functioning including the ability to safely swallow.
Nutritional Supports are basically supporting a person in safely achieving good nutrition.
Consider someone that eats with her head rolled back and to the left. This position prevents an adequate closure of the flap that protects the windpipe. Bits of food can just fall right on into the airway. She develops aspiration pneumonia which leads to fibrosis in her lungs. Even if the poor eating posture is thereafter corrected, the fibrosis will predispose her to further pneumonias.
The key lesson here is prevention. Nutritional Supports are basically supporting a person in safely achieving good nutrition. Below are a few general tenants of good nutritional support.
Basics of proper alignment for eating:
The above is general information and should not be implemented for any particular person without consulting with their healthcare professional. Always refer to a person’s Physical and Nutritional Support Plan for individual guidance of positioning and proper techniques for safe eating.
I’ve practiced medicine in the field of healthcare for people with intellectual and developmental disabilities for many years, and sadly, I had never heard of the term “Physical and Nutritional Supports.” Sure, we did some of these things in our clinical support of people with IDD, but we never had fully understood what I consider this “lost art.” It’s time to put an end to that way of thinking. In this newsletter, we’ll talk about Physical Supports, and in a later newsletter, we’ll delve into Nutritional Supports. Much of what you read in these articles was adapted from the writings of HRS founder Karen Green-McGowan, RN. I’m thankful for the opportunity to have learned this and so much more from her.
People with physical disabilities often have conditions like cerebral palsy, spasticity and contractures of their extremities. Often, they are prescribed physical therapy for range of motion. There’s nothing wrong with that, but let’s look at it this way. We’ll compare weight loss to physical therapy to illustrate the concept.
Physical therapy is often delivered in doses to a person who needs modification of life-style 24 hours a day.
Consider a person who is morbidly obese. Doses of therapy, such as a 300-calorie meal three times a week, will seldom impact the problem unless movement and intake are modified 24 hours a day. Many clinical services are delivered in doses, but most major issues, such as obesity or recovery from a stroke, require a major alteration in lifestyle
With that in mind, consider a person who has a physical disability. They go to see a physical therapist for three doses of physical therapy per week. They then return home and are placed in a chair for the rest of the day before being placed in bed. That physical therapy is wasted and will have little, if any, impact on the health of the person. Ninety minutes of stretching a week compared to the remaining 9,990 minutes in the week spent sitting or lying down with little active movement just won’t do it.
Physical therapy is often delivered in doses to a person who needs modification of life-style 24 hours a day. Babies born with hemiplegia, the most common form of cerebral palsy, want to use only their good side and leave the involved side dragging behind. When they are forced to use the involved side from the get-go, within a year or so, one can often not tell that the toddler had a disability at all.
This makes the case for 24-hour planning that utilizes many forms of supports to get the function of a healthy body. It is not only up to the therapist or clinician to manage the person’s health. It is up to each person who supports them to understand the forms of support this person requires and how they fit in. Techniques to support people 24/7 are relatively easy to learn and to implement by all staff including direct support professionals when guided properly by a physical and nutritional supports plan. Rather than focusing on doses of therapy, we should develop a therapeutic lifestyle. It just makes sense.
February is American Heart Month. It’s the month where red attire is worn on the first Friday to bring awareness to heart disease in women. It’s also the month that includes Valentine’s Day, roses and romance. It’s the Valentine’s Day heart experience that we will talk about in this article.
Many people who have never supported persons with IDD think they are either asexual beings or it is simply wrong for them to have a sexual or romantic relationship. Even some people who support them think that is the way it should be too. After practicing in this field for almost 25 years, I can speak with authority that close friendships, love, romance, sex, marriage and having children do occur.
If a couple can both consent to a sexual relationship, there is nothing that should prohibit them from having a sexual relationship.
People with IDD have the same hormones that their typical peers have. Most generally have the same genitalia. Sexual desire is a natural occurrence related to hormonal stimulation and more than likely they are going to act on those desires and impulses. If a couple can both consent to a sexual relationship, there is nothing that should prohibit them from having a sexual relationship. This relationship can fall under the LGBTQ acronym as well as a heterosexual one. There are a couple of caveats–they both need the capacity to consent, verbally or through other means to show understanding and the couple must be educated on safe sexual practices and freedom from abuse and exploitation.
Sometimes, sexual release is found through masturbation for both males and females. This is OK too if it occurs in an appropriate private area. Knocking on a closed door AND waiting for a response that it is OK to enter, should be the standard for allowing privacy. If masturbation becomes obsessive, this can cause skin damage and a plan needs to be put in place not to stop the masturbation but reduce the incidences.
Relationships are not all sexual, but the couple may engage in hand holding, kissing, hugging or just sitting next to each other on the couch. This type of relationship is just as important as a sexual one. It may be impossible to tell if they love each other or are just happy being together. But, does it really matter? Both people receive caring gestures from someone else and it fulfills the desire to have a close connection with someone other than family.
Marriage and children are in the cards for some people. Counseling is suggested prior to marriage, so both go in with their eyes open and knowing what to expect. What if the marriage is not successful? Well, doesn’t that happen in many of their neurotypical peers as well? If having children is being considered, genetic testing is recommended in order to determine the types of genetic syndromes that may be passed on to the child.
Relationships are important in everyone’s life. Relationships can come in many shapes and sizes and one size does not fit all. It’s not “cute” or “precious” or “adorable,” it is two people finding someone that they can connect with in the way that fits them. It doesn’t matter if you are listening to your heart thump for health or thump for someone important, remember during American Heart Month that both are important.
I, like many of you, have sat through my fair share of boring trainings. Raise your hand if you dread that annual mandated refresher training. Me! I never thought that training would end up saving someone’s life…
Let me back up. I’ve worked as a DSP, House Manager, and QIDP here in Illinois. On that fateful day, most of the shift goes by relatively uneventfully. Around 2 a.m. you start going a little cross-eyed, right? So I took a break from rearranging the med closet and went to do hourly checks.
We had one resident in particular, Mellie*, who would awake periodically throughout the night so it was not uncommon to hear her up in her room singing or laughing at something on TV. She had just been on home visit two days ago with her sister so she had been in a particularly good mood the last few days.
If I didn’t do that refresher training and been aware of what to look for, Mellie may have become septic by morning and this story would be a lot different.
When I stopped by her door though I heard grumbling and decided to knock. Mellie was awake, tossing and turning in her bed, sweating, and appeared feverish. I asked if she was feeling alright and she said “no.” Okay, deep breath, don’t panic, what do I do first? I’m here all alone, it’s the middle of the night, how do I handle this? Call the nurse. Okay, but she’s going to want vitals so I need to get those first.
Back to the med closet. Four vitals, wait, what are they again? Blood pressure, pulse, temp, respiration rate. Thank you, nurse Sherry, for burning those into the back of my head during the refresher. Temp and respirations were both high, and when I went to get her blood pressure and pulse I noticed blue discoloration on her nails. Okay, wait. Fast breathing, fever, bluish discoloration… Pneumonia? A quick call to Sherry and 911 and off to the ER we went followed by a 5-day hospital stay due to aspiration pneumonia.
While on home visit, Mellie had briefly choked on some mashed potatoes. Since she recovered quickly with no reported discomfort or pain, her sister hadn’t thought to mention it. If I didn’t do that refresher training and been aware of what to look for, Mellie may have become septic by morning and this story would be a lot different.
These types of life and death calls are made every single day by frontline staff and are why it’s so critical that you have that second cup of coffee before attending a training and let this story prevent you from nodding off.
*: Mellie is not the person’s real name, it was changed for privacy.
Eating disorders are generally considered and diagnosed in neurotypical people, but did you know they can affect persons with IDD as well? Although serious and sometimes fatal, they are treatable.
The person typically has an uncommon relationship with food. It can be portrayed in their actions, their justification for it or it can be their lover, comforter and friend. Eating disorders can also stem from distorted perceptions of weight and body image. Females are more often affected than males.
Many people do recover from eating disorders but may relapse during stressful periods in their life.
Anxiety, depression, substance abuse and obsessive-compulsive tendencies often occur in combination with eating disorders. Anxiety is the most frequently seen in connection with an eating disorder.
Here are some eating disorders that you may see:
The primary goal when treating a person with an eating disorder is to first treat the malnutrition and the underlying damage caused to organs when possible. Many people do recover from eating disorders but may relapse during stressful periods in their life.
Join us for a discussion on the often-overlooked topic of reproductive health for women with IDD, emphasizing empowerment, education, and access to quality healthcare.
