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Worth the Risk: A Toolkit for Teams on Balancing Risks and Supports to Maximize Quality of Life

Introduction


A critical component of serving individuals with developmental disabilities is ensuring their health and safety while maximizing their independence and self-reliance. Teams are challenged to identify supports that protect individuals from risk in the least restrictive manner appropriate to their needs. But there are no easy answers or clear guidelines. In an attempt to minimize risk and decrease the potential for bad outcomes, teams often make decisions to increase staffing levels—even though more staffing does not always lead to better outcomes.


These challenging decisions have been made even more complicated by unprecedented workforce shortages that limit the availability of staff to provide supervision and support. As stakeholders in Ohio’s developmental disabilities system, our organizations have compiled the following resources to support teams in creating plans that promote health and safety without being unnecessarily restrictive or overstaffed. We believe that decisions using these resources will result in more individual satisfaction, improved quality of life, and better deployment of staffing and technology resources.


This toolkit is intended to help identify issues to consider when making decisions rather than determine a specific path forward for every individual. We recognize that no guidelines or resources can be expected to provide an answer for every situation or circumstance. These resources are for all members of an individual’s team—the individual, SSA or QIDP, provider, guardian, family members, and other supporters.


There are several steps that teams follow to make decisions. This toolkit provides resources and guidance for:

  • Identifying risks

  • Matching identified risks to needed supports

  • Evaluating options, including technology

  • Addressing specific challenges

  • Documenting the decision-making process

We believe that these resources will give teams confidence in the decisions they are making to balance each individual’s health and safety with maximizing their independence and minimizing restrictiveness.



Identifying Risks


The first step in addressing risks is understanding specific and unique risks, and how these risks impact the individual and people around them. It is important to clearly identify risks—but it is also important to understand that everyone experiences risks. Addressing risks includes realistically evaluating the harm related to each risk.


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Be realistic and understand the dignity of risk


No one can live a life that is free of all risks. In fact, there can be great benefits to facing reasonable risks and learning from the outcomes of those situations. Reasonable risks may include the types of risks that most people face, or that most people would still choose to face even after considering the potential harm. Dignity of risk is a key component of self-determination—it means that people deserve the opportunity to experience some risks instead of being “protected” from every possible risk. So it can actually be a concern if a person has no risks in their life.


Consider risks in a variety of areas

Risks can present differently across settings and based on changes in circumstances. As teams identify risks, they should review each location (home, work/day program, community, transportation) and any expected patterns (when the person is not feeling well, when around certain people or groups) to thoroughly recognize risks. This exploration needs to include the person and others who know them best, such as family members, friends, DSPs, and other team members.


Ask for help

Team members are not experts on every type of risk or support. A professional evaluation can be a valuable tool in identifying risks in areas such as:

  • Behavioral antecedents – by a behavior support specialist

  • Home safety – by a fire marshal or remote support specialist

  • Feeding and swallowing – by a speech-language pathologist and/or occupational therapist

  • Sexual offending – by a licensed clinician trained in offender behavior


Resources


checklist for identifying risks
.pdf
Download PDF • 1.56MB

Videos

This Keeps People with Developmental Disabilities Safe






Matching Risks to Supports


Team members are often faced with the difficult task of solving a risk issue with few clear solutions. Not all risks should be handled the same way—and increased supervision cannot always protect an individual from harm. Supervision levels or services can become rigid categories instead of being tailored to the person’s needs. A step-by-step approach helps to match the risks to the right supports.


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Evaluating Technology Options


Technology options for supporting individuals with developmental disabilities have rapidly expanded, and teams are expected to consider “Technology First.” But teams may be hesitant to use technology, unsure about the available options, or unclear on how to balance the risks and benefits of each option. Being equipped with knowledge and understanding that in-person staffing is not necessary in every situation can empower teams to make the appropriate decision for each individual.


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Check Your Assumptions

Because in-person staffing is “how we’ve always done things,” team members might consider technology options to be less safe, but that’s not true. Each situation must be considered individually because remote supports and other technology can be just as safe or even safer in the right situations. For example, a person who resists in-person staff may be safer at home with remote supports, or a person who lives independently may feel safer knowing that remote staff are available any time they need them.

 

Ask the Experts

No one can be expected to know all of the technology options available—especially as new systems are developed. So teams can access the expertise of professionals providing the service and individuals who are using technology in their daily lives.


Many consultation services are available to review an individual’s situation and identify potential technology solutions that can meet their needs. These services are rapidly evolving, so it is important for teams to be aware of how to access the experts who can help them understand what is available.

 

Think Creatively

Technology options are not just about remote supports and programs that are disability-specific. Everyone uses technology to support their daily needs, so teams can consider a broad range of both off-the-shelf and tailored options to meet the identified risks and needs of the individual. Smart phones, smart watches or other wearable devices, smart home equipment or appliances, and many more systems can increase independence while being connected to the supports that keep an individual safe. Ohio has developed numerous opportunities for individuals and teams to explore a wide variety of creative options.

  • Lending libraries provide technology for a trial period to see if it is a good fit

  • Model technology homes show real-life examples of how technology can be used to support more independent living, and some offer virtual tours

 

Resources

DODD Technology First ResourcesOhio DD Council Assistive & Supportive Technology Resources


Addressing Specific Challenges


Service Refusals

Service refusal by individuals manifests in several ways, such as when an individual:

  • Is not physically at the specific service location when services are scheduled to be provided

  • Refuses to engage in services as DSP attempts to provide them by:

    • Not letting the staff enter (won’t open door)

    • Refusing to leave with DSP to engage in activity (attend appointments, run errands, go to work)

  • Damages or refuses to use equipment or applications installed in the home for use as remote support

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When someone refuses support, teams often respond by doing “more.” This results in more staff being assigned to work more hours, or even a more restrictive setting.

Instead, teams can start by re-evaluating the true level of support the person needs in their life. Instead of automatically adding more support, reconsider what kind of support is truly needed based on the identified risks. While there will always be situations where hands-on support from a DSP is necessary, there are also many instances where education, practice, natural supports, and remote supports will be just as effective at reducing risk. This is particularly true if the person will accept and engage with the remote supports more readily than with a person. Consider questions like:

  • What is the reason for the refusal? A desire for independence, conflicts with a particular DSP, anxiety about an appointment, miscommunication about a schedule, or something else?

  • How can the team address the underlying reason for the refusal?

  • Are there alternative services (including technology or natural supports) that could also address the identified risks?

 

Knowing When to Make Changes

When an individual has intensive services in place–such as 2:1 staffing–it can be difficult to decide when to scale back those supports. If things are going well for the person, teams may question whether it is because of the supports that are in place, or in spite of them? There may be a desire to reduce the supports but concerns that the hard-won progress will be lost if changes are made.


It is important to get the perspectives of the individual, DSPs, and others who are involved in supporting the person about issues such as:–  Has there been a change in the person’s mental or physical condition?–  Is there any behavioral data that shows a decrease or changed pattern of risks?–  Should another evaluation be completed to re-determine the current risks?

Based on this information, if the team believes that it is appropriate to reduce the intensity of the supports, consider implementing the change gradually with a periodic review.


Options include:

  • Using behavioral data to identify particular locations or times where reduced supports could start

  • Making reductions on a trial basis and then reviewing whether they should become permanent

  • Implementing technology in place of or as a supplement to reduced supports


Documenting the Decision-Making Process


It is always important to document the team’s decisions—but it is especially important to document the decision-making process when there are no clear answers and the team is making the best decision it can with the information available. Documentation will include the Ohio ISP, but also meeting minutes and case notes. Good documentation always includes the 5 Ws and 1 H


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Who…

  • participated in the discussion? (include names and team roles)

  • provided information that the team considered?

  • gave consent to the final decision?

  • dissented from the final decision?

  • is responsible for next steps?

 

What…

  • issues did the team address?

  • what risks were identified?

  • input did each team member provide, especially the individual?

  • options were considered?

  • services and supports will be put in place?

  • are the next steps?

 

Where…

  • will services and supports be implemented?

  • is any other documentation of the information reviewed or options considered? (include evaluation reports and person-centered tools used to evaluate risks and options)

 

When…

  • will services and supports be implemented?

  • can the individual try out new or different services and supports?

  • will the team review the decision and the need for any changes?

 

Why…

  • was the final option selected?

  • were other options or less restrictive alternatives rejected?

  • does the person need the selected supports?

 

How…

  • were risks evaluated?

  • was the individual’s input incorporated?

  • is progress being measured?

  • does the team plan to communicate and review the plan and the need for any changes?


Conclusion


Approaching supports in this way means that all team members—and all system partners—must be more comfortable thinking about risk and how to balance it with safety and quality of life. We will need to not assign blame if a decision is not immediately successful, but rather work as a true team to determine what went wrong so improvements to the support strategy can be made. Most importantly, we need to be checking in with the person who is receiving the services every step of the way to ensure the supports they receive are keeping them safe, but not making them miserable!


Concerns about the health and safety of the person being served must remain a primary consideration, but they should not be the only consideration. Our system is evolving as we continue to grow in person-centered planning while dealing with the challenges of the current workforce crisis. These have highlighted the need for us to look at things differently as a system. It is time to prioritize helping people stay healthy and safe by employing less invasive and often less restrictive support strategies.


Our organizations are committed to supporting each other, our members, and other partners in the DD system to continue to build a team culture that meets the needs of the individuals we serve while helping them grow their skills and independence.

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