Today’s guest author is Loren Pilcher. Loren has worked in the field of developmental disabilities in Indiana for over 20 years, including serving as a direct support professional (DSP), director of supported living, and director of community supports. He also worked for the Bureau of Developmental Disabilities in Indiana for several years and performed clinical evaluations for Hoosiers with developmental disabilities in over 40 counties. Loren currently helps run a company in southern Indiana that provides a variety of supports for adults and children with developmental disabilities and is an active volunteer with Indiana’s Statewide Council for Independent Living (INSILC).
Restraint is currently a hot topic with the media and lawmakers alike due to the recent deaths of people in custody at the hand of police officers. There are calls across the nation for police departments to ban the use of chokeholds and other dangerous restraints. But, what about restraint use in other settings besides law enforcement? Police aren’t the only ones to use restraint on the job. For instance, staff members who work with kids and adults with developmental disabilities use restraint.
Can something like the restraint-related asphyxiation deaths of George Floyd, Hector Arreola, Muhammad Abdul Muhaymin, and Elijah McClain happen to someone with developmental disabilities in a residential, sheltered workshop, or day program setting in Indiana? Absolutely.
As a person with developmental disabilities or someone with a loved one with developmental disabilities, should you be concerned? Absolutely.
Is Indiana doing enough to protect folks with developmental disabilities in Medicaid Waiver programming against unnecessary and dangerous restraint? I absolutely believe it is not.
Currently in Indiana:
- A person with developmental disabilities may be placed in a restraint where their arms are pulled behind their backs or wrapped around their chest, which can cause them to suffocate and die. There are no laws in Indiana banning chokeholds or any other restraint that cuts off airflow or blood circulation are banned.
- A child or adult with developmental disabilities may be restrained for hours at a time because there are no laws in place to ensure that there are time limits. A staff member may sit on a child or adult with disabilities for long periods of time, even if their breathing is being restricted.
- A child with developmental disabilities can be put in a restraint hold without either his/her or parental consent. In fact, any adult or child with a developmental disability, regardless of their medical history or the staff member’s training, might be put in a restraint hold at any time a staff member deems it necessary based on the staff member’s sole judgment.
- Some staff members working with people with developmental disabilities are using restraint after only receiving 45 minutes to four hours of training.
- Even though Waiver providers serve children, the state does not require that child-specific physical interventions be taught. In other words, the same restraint methods for a 5’ 9” 200-pound adult are being used for a 3’ 5” 40-pound child.
- A child with developmental disabilities may be forcibly held to the ground or against a wall as a form of restraint.
- Staff members at Waiver providers are not required to receive training on how to spot the signs that a person in a restraint might be dying.
- In Waiver programs, there is no state oversight of types of restraints allowed (besides prone restraint), how restraints must be trained, and if the restraint program is even one based on proven research and science. In other words, a Waiver provider can construct their own restraint program that places staff members and people with disabilities at risk of injury and death.
- Unlike psychiatric settings, in a Waiver setting medical personnel are not required to assess a person for signs of trauma after restraint is used.
- Indiana law does not ban Waiver providers from using restraint for people with particular types of medical conditions that make any type of restraint deadly. For instance, if a person has serious breathing issues or fragile bones, they may still be placed in a restraint.
This article addresses laws and policies regarding children and adults with developmental disabilities in Indiana Medicaid Waiver settings. For those not familiar, a Medicaid Waiver is a type of funding for folks with developmental disabilities to get support in the community. For instance, Waivers fund supported living programs for people to get assistance to live independently, day programs, and community programs designed to promote inclusion. The Waivers also support the families of folks with developmental disabilities by providing them with supports like respite care and other home-based services. In Indiana, there are two Medicaid Waivers that adults and children can receive: the Family Supports Waiver (FSW) and the Community Integration and Habilitation (CIH) Waiver supports. Every state has its own Medicaid Waiver rules, so please note that this article will not be applicable to other states.
Some of the things that I am going to discuss will sound unbelievable, but they are not. I will cite the specific laws and Indiana Division of Disability and Rehabilitative Services (DDRS) policies for you to see for yourself. I know that reading about particular laws and policies may be difficult to follow at times, but it is important for folks with developmental disabilities and their loved ones to understand them.
Restraint laws for those in waiver services
Let’s talk about the specific laws and policies in Indiana regarding the use of restraint in Waiver services. Restraint is addressed in two different places: Indiana Administrative Code 460 (460 IAC Article 6) and DDRS Policies. Here is a link to both of them:
Indiana law defines a “manual restraint” as “using physical force to hold a person, restricting their free movement” (DDRS Policy 460 0228 025, page 6). That’s the extent of the definition. Indiana law does not spell out exactly what types of restraint techniques are allowed to be used by Waiver providers in Indiana. However, it does clearly state what restraints are prohibited. This is from the DDRS Policy 460 0228 025 “Use of Restrictive Interventions, Including Restraint”:
Prohibited Interventions
- Any restraint used for convenience or discipline is prohibited and shall not be used.
- Prone restraint where an individual is in a face-down position on their stomach and it is prohibited and shall not be used.
- Any aversive technique is prohibited and shall not be used.
- Mechanical restraint shall not be used except when ordered as a medical restraint by a licensed physician or dentist.
This contains some jargon that needs to be clarified. An “aversive technique” in Indiana is defined as the following (DDRS Policy Number 460 0228 025 found on page 6): “an intervention described in BDDS policy that: incorporates the use of painful or noxious stimuli; incorporates denial of any health-related necessity; or degrades the dignity of an Individual.” The state further defines aversive techniques in DDRS Policy 460 1207 003 “Aversive Techniques” as contingent exercise, contingent noxious stimulation, corporal punishment, negative practice, overcorrection, seclusion, visual or facial screening, and any other technique that incorporates the use of painful or noxious stimuli, incorporates denial of any health-related necessity, or degrades the dignity of an Individual. To find out more about what each of these terms means, please see that specific policy. I only mention aversive techniques to point out that none of these techniques has to do with restraint.
A “mechanical restraint” is defined as “using any device, material or clothing on, attached, or adjacent to a person’s body that cannot be easily removed by the person, restricting their free movement” (DDRS Policy 460 1207 003, page 6). Mechanical restraints are not allowed unless they are prescribed by a medical physician or dentist. Therefore, unless it is a restraint for a medical reason (like a wheelchair harness, helmet, or pressure alarm), physical restraint may not be used. A Waiver provider can never use a mechanical restraint for a behavioral reason. For instance, a Waiver provider cannot strap a person to a chair or bed if that person is experiencing a behavioral episode.
To recap: Indiana law does not define exactly what types of restraint techniques can be used by Waiver providers. The policy only states that Waiver providers may not use restraint for convenience or discipline; may not use any type of restraint where the person is face down on the ground (prone); may not use an aversive technique; may not use mechanical restraints for behavioral issues.
This is where things are potentially problematic. Under Indiana law, a Waiver provider can use any restraint program it chooses, as long as it does not incorporate any of the above-mentioned prohibited techniques. Indiana law does not state that the restraint program must be accredited, created by professionals, nor is there any law in place that states that Indiana must approve a Waiver provider’s restraint program before the Waiver provider puts it in place. This means that technically a Waiver provider may create a program of their own using restraint techniques that have never been proven by experts to be effective or safe. This paves the way for restraint programs to be put in place that may incorporate dangerous and deadly techniques. This is alarming, to say the least, and completely unacceptable.
Do Waiver providers actually make up restraint programs, though? I know of at least one major Waiver provider that serves the entirety of Indiana that completely made a program from scratch, piecing together components from several different crisis prevention and restraint programs.
I have also worked at other Waiver providers who used a nationally accredited program but simply chose not to teach the entire curriculum because the provider felt parts of it were unnecessary or that the curriculum was too long. By leaving out parts of a carefully crafted program based on data and scientific research, it is essentially creating a new program.
Would you want to be cared for by a nurse who went to a college where the professors made up their medical courses not based on science or safety? Or where professors were allowed to leave out content about patient care that could potentially be lethal because they didn’t feel it was necessary to teach it? The state of Indiana would never allow that situation, yet it allows the one I described above regarding restraint programs.
Indiana allows dangerous and deadly restraints
People die from being restrained. Prone restraint (the only technique banned in Indiana) is far from being the only deadly/dangerous technique. Any restraint that maintains a person on the floor in any position – prone, supine (on the back with the spine parallel to the floor), or sidelaying – can be deadly; any technique that forces the person to the floor, chair, wall, or other place can be deadly; any restraint that lasts longer than three minutes can be deadly; any restraint that restricts airflow can be deadly; any hyperextension of a body part can be deadly; any pressure or weight on any part of the chest, lungs, sternum, diaphragm, back, or upper abdomen can be deadly; any technique that obstructs or restricts circulation of blood and/or airway can be deadly; any technique that involves straddling or sitting on any part of the body can be deadly; any pressure on the chest, lungs, sternum, diaphragm, back, or upper abdomen can be deadly; any type of technique of that involves choking, hand chokes, and arm chokes can be deadly; any technique that involves pushing into the person’s mouth, nose, eyes, or any part of the face, or covering the face or body can be deadly; restraining a wheelchair user while in his/her chair can be deadly; any type of basket-hold can be deadly; and any lifting or carrying of a person who is actively combative can be deadly.
What’s more, any restraint that lasts longer than three minutes can be deadly. In most states, the maximum amount of time that wrestlers are allowed to engage in physical contact is three minutes. Why? Because hypoxia can begin after three minutes of increased oxygen demand and decreased supply. In addition, an irregular heartbeat can be the result of extreme exertion due to the inability of the body to excrete toxins from the cells. These wrestlers are in excellent physical shape, while most caregivers and individuals receiving services are not. If time limits have been set for wrestlers at peak physical shape for their safety, then the same time limit should be applied for Waiver provider staff members and clients.
Restraints are traumatizing to not only the person being restrained but also to the person who is performing the intervention.
In addition, restraints are dangerous to the person and staff members alike. In studies by the Child Welfare League of America (CWLA) and the Texas Department of Mental Health and Retardation [sic] (TDMHR), it was discovered that caregivers are twice as likely to be injured than the individual being restrained when performing a physical restraint. It is a fact that physical restraints can lead to the death of the person being restrained and/or a staff member performing the restraint, even if the restraint is performed properly. Because of the risks involved for the client and staff member, physical interactions are discouraged and only to be used as a last resort when all other non-physical interventions have been exhausted.
Sometimes restraint should not ever be used due to a health or medical issue that a person may have. For instance, if a person is obese, they are at greater risk of asphyxiation if there is even slight pressure on their chest or abdomen. Another example would be if a person had osteogenesis imperfecta then restraint would never be appropriate. Osteogenesis imperfecta means imperfect bone formation. People with this condition have bones that break easily, often from mild trauma or with no apparent cause.
By not having more stringent requirements regarding restraint techniques, Indiana is placing people with developmental disabilities and direct support staff at risk of death and injury. I can’t state it enough: the only restraint technique that is banned in Indiana is prone restraint. This means that staff members may be trained to sit on a client, use a technique that cuts off airflow, use a technique that involves hyperextension of a body part, use a technique that involves holding someone on the ground or against a wall, or have someone in restraint for longer than is safe.
Children and adults die from being restrained. It is a fact. Although it is disturbing reading, I recommend the following report to truly understand how deadly restraint can be:
There are over 60 stories in this report that demonstrate the lethal consequences of restraint and the circumstances that aligned that made them deadly.
Anyone in waiver programming may be restrained
Page 4 of DDRS Policy 460 0228 025 “Use of Restrictive Interventions” states that any behavior support plan that has restraint in it must contain the following:
- A directive from release from restraint when the individual no longer presents a risk of harm to self or others
- Measures to be initiated in the event of injury from restraint
- Documentation of the person(s) executing the restraint
- Documentation of the times and duration of the restraint and the times and duration of any attempted release from restraint
- Documentation of the individual’s response to each restraint usage and
- A directive to file an incident report with BQIS following each restraint usage
However, this is problematic because behavior support providers do not have any control over the program that other Waiver providers employ for crisis intervention nor do they have control over another Waiver provider’s policies and procedures regarding their documentation of a restraint. Therefore, behavior support providers feel that if they do not have control over these measures then ethically they cannot place them in a behavior support plan in good conscience. In other words, behavior support providers are never in charge of the training of restraint techniques or the program that a Waiver provider chooses to use. So, why would a behavior consultant ever put this in a plan? Restraint is an emergency procedure that is only to be used when every other planned intervention has failed to keep the client or others around them safe from harm.
To plan a restraint condones it as an acceptable practice to habitually employ.
I mention behavior support plans because I have heard it stated before that including restraint in a behavior support plan keeps people safe. However, as you can see, nowhere in the above-mentioned policy does it state that the restraint technique has to be specified nor does it have time limits on how long a person may safely be in a restraint.
I also mention behavior support plans for another reason. Many people with developmental disabilities (and their loved ones) assume that if restraint is not on a behavior support plan then that person may never be placed in a restraint. However, this is not true. DDRS Policy 460 0228 025 “Use of Restrictive Interventions” states that a “restrictive intervention” (which restraint falls under) may be used in a “behavioral emergency” (defined in the same policy as “the occurrence of an unanticipated challenging/dangerous behavior exhibited by an individual that has not occurred before, or that has occurred no more than one time during a six month period”) without being planned when all of the following are present:
- An unanticipated behavioral emergency exists
- An individual’s behavior poses an imminent threat of harm to self or others
- There is no approved BSP for the individual that addresses the behavioral emergency or there is an approved plan but it has been found to be ineffective and a more restrictive intervention is indicated based upon the individual’s behavioral emergency
- The intervention chosen is determined to be the least restrictive measure required to quell the unanticipated behavioral emergency
In other words, without any prior approval, a staff member may place a person with a developmental disability in a restraint using his or her personal judgment if a behavior the person exhibits is “one that presents imminent serious danger to themselves or others” (DDRS Policy 460 0228 025 found on page 6). However, this judgment call is an extremely difficult one to make that requires intensive professional training that the state of Indiana does not require direct support staff to have.
To illustrate the dangers of the aforementioned policy, I am personally familiar with a case where a friend receiving supported living services had her ankle broken when a staff member decided to restrain her and forcibly took her down to the ground. For what? This person with a developmental disability was attempting to leave her home and take a walk to blow off steam, something that was clearly written in her behavior support plan as a de-escalation technique. What was not written anywhere was the use of restraint. Yet, she still ended up being thrown to the ground and held there. The state of Indiana did an investigation that proved wrongdoing on the staff member’s part and the staff member was terminated but was never prosecuted for abuse. The company continues to use the same restraint program that that staff member was trained on.
Lack of training requirements and oversight
Since the state of Indiana does not specify what type of restraint program a Waiver provider uses, they also don’t specify what the training on a restraint program consists of. For instance, the state does not clarify how long a training curriculum must be, what materials it should cover, nor does it state how a person taking the training demonstrates competence. I have heard direct care staff tell me that their training constituted a 45-minute long training without any demonstration of techniques. This is terrifying.
To give you a comparison, staff members who work in psychiatric facilities typically have anywhere from 12 to 20-hour training on restraint techniques alone and must have a refresher course every 30 days to ensure that they are continuously competent. If you are in Waiver services or have a loved one in services, ask a staff member about their restraint training experience. Better yet, ask that person to discuss a restraint technique and see if he or she can do so. I don’t say this to be critical of direct care staff, but to be critical of the training offered by Waiver providers.
In my 20 years of experience (several of those working at Indiana’s Bureau of Developmental Disabilities) in the field of developmental disabilities, I can confidently say that most direct care staff receive six to eight hours of crisis prevention training with only around two of this spent on actual physical restraint technique. I have never heard of a Waiver provider that requires their staff to take any refresher courses. Some providers do, though, have programs that require recertification every two years. Again, the state of Indiana does not stipulate any training requirements, so you have some providers like the one mentioned above where training is less than an hour.
Would you want yourself or your loved one to be restrained during a behavioral crisis by a person who has only received training for a couple of hours on techniques that have proven to be lethal even when completed properly? Techniques that the staff person may have only been trained on once and not practiced in over a year?
Some Waiver providers don’t understand the law and simply don’t train on any physical interaction techniques, even though (as discussed above) their staff have the authority to restrain anyone if they believe that they are acting in an unsafe manner towards themselves or others. DDRS Policy 460 0228 027 “Requirements and Training of Direct Support Professional Staff” states “All Direct Support Professional Staff shall demonstrate continuous competency in…physical interventions techniques needed for emergency behavioral supports described ‘Use of Restrictive Interventions’ policy.” I know of several Waiver providers firsthand that do not train at all in any physical interactions, not even any techniques on what to do to keep themselves or others safe if a person is experiencing a behavioral crisis. As one can imagine, this places people with developmental disabilities and staff members at great risk.
I am not saying that everyone needs to be trained in restraint because some staff members work with people who have no history of aggression.
However, at the very least providers need to train staff members on how to keep themselves and others safe without the use of restraint. Skills like these are not innate and must be taught in a proper manner.
One last important note on training. Since Indiana does not spell out what must be included in restraint training, this means that there is no requirement that staff members are taught that certain conditions exist in which restraint should never be used. For instance, folks who have cardiac issues, current respiratory compromise, are obese, or have other medical issues may never be safe to restrain. In the report on lethal restraint mentioned above, nearly all 61 of those who died had a medical condition at the time they were restrained and more than half were obese.
What’s more, Indiana does not have training requirements for restraint that address identifying the physical signs that someone in a restraint may be in distress (i.e., extremities cold to touch, vomiting, unequal pupil size). The lethal restraint report noted that nearly half of those who died had limited or no communication skills. Identifying physical signs of distress during restraint is a vital skill. If a person is not taught to identify these signs then they can kill someone. It’s that simple.
What can you do?
So, what can be done? First, if you are in Waiver services or you have a loved one in services, directly ask your provider about their training program on restraint and physical interventions. Ask to see the curriculum. Ask about how they ensure that staff members have continuous competency in physical interaction techniques. If a provider is teaching any of the dangerous or deadly techniques mentioned above, bring this to the president or CEO’s attention and demand change. Provide them with the information discussed in this article, especially the report on lethal restraints from above. If you are a staff member, demand better training from the provider you work for. By not doing so, you are placing not only the lives of those you serve at risk but also your own.
Second, talk to your lawmakers about the lack of restraint policy, your concerns about the lack of training requirements, and show up to make your voice heard at Task Force meetings. Indiana is currently working on overhauling its Waiver programs, so now is a great time to demand change regarding restraints. Here is more information about the Task Force: https://www.in.gov/fssa/ddrs/5455.htm.
Lastly, share the information contained in this article. A lot of Hoosiers don’t know anything about restraint policy in Waiver services. We have to change that. If you have a developmental disability, know your rights. If you are a loved one of a person with developmental disabilities, make sure that your loved one with disabilities knows to report to you any restraint use that he or she has witnessed or has done to them. What’s more, if you or a loved one is injured during a restraint, report this to the police and DCS (Department of Child Services) or APS (Adult Protective Services). Do not rely on others to report for you. Do it directly.
Although an individualized support team meeting (IST) is required by DDRS Policy 460 0228 025 anytime a restraint is used, I have rarely seen this actually practiced. The policy states that when a restrictive intervention (which restraint is included as) is used in a behavioral emergency that there is a “mandate for the provider to convene an IST meeting as soon as is possible, but not later than three (3) business days, following the behavioral emergency to discuss the behavioral emergency, the emergency interventions used and the supports needed to minimize future behavioral emergencies.”
If you or your loved one has been restrained, you need to demand a meeting with the Waiver provider, the IST, and possibly BDDS as soon as possible to discuss: what happened before the incident to possibly bring about the behavioral episode, what de-escalation techniques were used prior to the restraint usage that failed, what techniques were used during the restraint, how long the person was in the restraint, and how to prevent restraint from ever happening again. Do not assume that the provider is competent.
Always ask questions. If something doesn’t sound right, chances are that it isn’t right.
