What follows are vignettes from providers around the country who have worked to use Settings Rule person-centered practices and requirements to improve and enrich the lives of the individuals they support. It is hoped that these will help you and your staff think of new ways to do the same for the individuals you support.
Supporting individuals's preferred daily schedules
The individuals we support do not all eat lunch at the same time. Elka picks when and with whom she wants to eat, allowing her to socialize with different friends throughout the week. George, on the other hand, likes to eat early and without distractions or others in the room. Liza prefers eating later or sometimes not at all, so she is offered food or snacks throughout the day. Christian requires assistance with his meals and likes having a choice in who will assist him, which varies daily. We also work with individuals to schedule appointments and other service plan tasks around their personal schedules and preferences.
Supporting individual's choice in services
As Kacey was moving into a new home, she was assessed to need physical therapy, which is a service option provided by her provider. Even though receiving physical therapy at home was an option, Kacey chose to continue seeing the physical therapist she had been seeing before she moved. Kacey's provider assists her with transportation to get to her weekly physical therapy appointments.
Supporting individual's choices in activities
Miguel has shown little interest in participating in group activities and often becomes frustrated. His support team used person-centered planning to identify what is important to him. The support team talked with Michael about how he seems happiest sitting by the front door to watch individuals coming and going from his home. Staff began having Miguel help with tours to create a meaningful activity related to this preference. Over the past year, Miguel has enjoyed becoming a greeter and assisting with tours of his home.
Supporting individual's interests
Darius is very interested in U.S. presidential history and can name all the presidents and the year they served. President George H.W. Bush passed away on November 30, 2018, and Darius expressed interest in attending his funeral. Darius and his staff determined that it was not feasible to attend the funeral in person and explored other options. Darius was able to attend the funeral virtually and watch on an iPad. Darius and his team are exploring ways to engage in other meaningful activities that support his interest in U.S Presidential history.
Theo started an exercise routine years ago, using home exercise equipment. After a couple of years of this routine, he expressed an interest in joining a fitness center. We helped Theo to gather gym information, tour local fitness clubs and find out fees associated with each. With that information, Theo made the decision to join the YMCA. He now has a membership, and we help him with transportation and support to work out at least once per week. Since Theo joined the YMCA, four other individuals have also purchased memberships. We provide or arrange transportation for them weekly.
Understanding what is important to individuals
All individuals we support complete interest tracker surveys to help staff to create meaningful schedules that allow for choice and interest pursuits. We also use a reflection form to gather input on individual's experiences at specific destinations when they go out. The forms highlight what they liked or disliked about a destination and what accessibility challenges they might have experienced. These tracking forms assist staff greatly when working with individuals who are unable to communicate choice. We collect information from individuals, staff and community references to help us offer a wide variety of activities at various community locations.
Assessing and supporting a person's needs
We use an assessment process to identify community needs and preferences to include in individual's service plans. For example, during the assessment process, a person said they have anxiety when participating in large group shopping trips and prefers going on shopping trips alone or in small groups. To support this person's needs, we plan weekly small group or individual shopping trips for individuals so they can access their community resources.
Creating opportunities to support individual's interests and preferences
A person we serve expressed an interest in photography, so we created opportunities for him to take pictures at home and during community activities. This interest eventually grew into a passion. He now goes out on photo shoots to connect with his local community. We also noticed that other individuals we support started having an increased interest in the arts, which led us to partner with two nonprofits to open a space for art creation and exhibition that is fully accessible and open to artists from all walks of life. This has been an amazing venue to community integration - it has resulted in many collaborative projects and exhibits between individuals and established artists in the community.
Assisting in choice of services
Many individuals benefit from engaging in community education sessions or activities put on by the greater community. One person in our adult day program was interested in learning more about Parkinson's disease. Instead of inviting a community speaker to come to our center, we arranged for the person to attend a community Parkinson's support group once per week. He was able to meet other community members who share his experience with Parkinson's and discuss his concerns with others who understand what he is going through.
Assessing interests and preferences
As they are moving in, individuals and their interdisciplinary team members complete a formal interest and activities assessment. This assessment asks questions about their history and preferences in community activities traveling, special events, active games and group activities. It also asks more open-ended questions about hobbies or other interests the person finds particularly valuable or motivating. Then we review the assessment at regular intervals and talk about any areas where individual's interests and preferences have changed over time. We can use this information about new preferences to plan upcoming activities.
Asking friends and family
After asking for consent from the individual, we explore the activities and community engagements a person likes and dislikes taking part in with their guardian, family members or friends. In one such case, we discovered that an individual loved to go fishing. So, for the past few years, we have hired a local angler to take the individual and others fishing in a pontoon boat a couple of times a year.
Using nonverbal communication tools
When a person has limited or no verbal communication, staff use numerous methods to ensure individuals have a choice. Our computers have touch screens and software for assisting with communication. We also use iPads, picture schedules, Picture Exchange Communication System (PECS) and a large interactive touch-screen board to help individuals to communicate their choices. Staff encourage individuals to use their communication devices to share their ideas about what they would like to do in the greater community.
Setting up house rules
We have found an effective way to help individuals residing together in a home to set up appropriate house rules is to do the following:
- House rule discussions, facilitated by staff, need to start with establishing what is important to and for the individuals living in the home.
- Next, establish how decisions will be made. In a democratic environment, the majority vote is accepted by all. Or, must decisions be unanimous?
- Staff may facilitate the establishment of rules that are reasonable by adding to the considerations and judgment to form the rules.
- Provide communication support for individuals who may have more difficulty communicating verbally or making decisions quickly.
- Establish a way for the group to decide how it would like to review infractions and review through a house meeting how the rules are working for everyone.
Examples of permitted house rules include"
- Each individual is encouraged to have guests. There are no set visiting hours.
- Each individual may choose the time and place of their meals and snacks.
- Residents have the right to a legally enforceable residency agreement which may influence house rules (e.g., whether pets are allowed).
Tonya's friend Belle likes to stop by to visit when she is in the area. Tonya's home allows visitors at any time. If Belle visits after a certain time and the doors to Tonya's home are locked, Belle must use the doorbell. If Belle comes to visit and other individuals are sleeping, we expect Belle to be quiet and respectful of all the individuals who live in the home.
Program staff promote the right, as well as the expectation, of "freedom of association" for individuals. For example, program staff encourage individuals to invite their friends, family and team members to visit, then encourage individuals to provide tours of their various jobs and activities at their home when they have visitors.
Nicolai has a seizure disorder that requires frequent checks. Nicolai's person-centered plan clearly instructs staff to knock on his door before entering to allow privacy, except during sleep times. The plan also lays out what should happen if Nicolai does not answer a knock. The plan maximizes Nicolai's right to privacy while supporting his health need for uninterrupted sleep.
Explaining individual's right under a residential agreement in a way they can easily understand
We explain the terms of our residential agreement in a format that individuals can easily understand. For example, we met with Sonam and her Case Manager to review the terms of her agreement, including her rights and responsibilities before Sonam moved in so she could make an informed decision about where she wanted to live. To make sure that Sonam understood the terms of the agreement, we gave one or more examples for each part of the agreement, then paused to discuss Sonam's questions.
To talk about Sonam's right to decorate her room, we explained how other individuals decorated their rooms and provided some additional decorating options. Then, we talked about what types of decorations Sonam might be interested in. We followed this pattern for each major component of the agreement to be sure Sonam fully understood her rights and had ample opportunity to ask questions.
Involve individuals in planning and choosing community activities
Individuals we support sign up for activities they want to do, including shopping trips, movies, music, walks, the zoo, nature centers and community events. Staff typically provide transportation, if needed, and support, if requested.
To plan activities, our activities director regularly meets with individuals in groups and individually to hear about what community activities they would like to do. We try to encourage individuals to participate in activities outside their home - like going to a local movie theater. We purchase movie passes for individuals who cannot afford them and make sure the passes are readily available. We also provide transportation. In addition, we schedule at least one group shopping trip each week to a city at least 30 miles away. Staff go on the shopping trip to assist individuals as needed.
Creating individual plans with individuals
Staff members work with individuals to plan community activities throughout each month, depending on what individuals want to do. Individuals are encouraged to express their interests and explore community activities that they may enjoy, either by themselves or as a group.
Sarah enjoys planning volleyball as one of her preferred activities. Sarah does not require constant supervision. Her support plan documents that Sarah is able to walk independently to a nearby community center to join in an open volleyball session. During the season, she has the opportunity to play and interact with other community members.
Taking advantage of what is already happening in the community
A wide variety of activities, events and places exist for individuals to spend time in the community, including:
- Arts: art lessons, community theater, concerts, exhibits, festivals, galleries, museums, plays, putting on plays or performances, shows and sales or original art and teaching art in schools.
- Community events: celebrations, clubs, community centers, community education classes, county fairs and festivals, faith events and services, fire station tours, information sessions, meet and greets, parades, senior centers and volunteering.
- Entertainment: amusement parks, book clubs, bowling, circuses, dances, libraries, lunch at the corner shop, movies, parties, shopping trips, and sporting events including community, high school, minor league and professional games.
- Exercise: bicycling, billiards, chores, golf, gym and exercise classes, mall walks, outdoor games, park walks and roller-skating.
- Outdoors: apple orchards, boating, beaches, camping, community gardens, dock fishing, dog parks, farms and farm tours, hikes, nature centers, picnics, petting zoos and public pools.
- Routine activities and errands: banks, beauty shops, clinics, coffee shops, convenience stores, doctor's offices, grocery stores, guitar stores, animal shelters, post offices and shopping malls.
Seeking out volunteer opportunities
Individuals we support engage in numerous activities each week, including newspaper delivery on Wednesdays and food delivery to older adults on the first and third Fridays of each month. These opportunities are available to everyone. The food delivery activity is highly interactive because the individuals we support take time to visit with the older adults to whom they deliver meals. Some very special connections and ongoing friendships have been made this way.
Scheduling around individual's work schedules
Arnold has a part-time job. Arnold discusses his work schedule with staff in his home who work to schedule services and supports in a way that complements his work schedule, including packing a lunch. Arnold doesn't get home until 7 p.m. from his part-time job. Staff make sure that he receives support to make his dinner upon his return from work.
This webpage from the Council on Quality and Leadership helps individuals understand the HCBS rule through videos, documents and other resources.
This guide to supporting the right to a community life highlights how providers can help individuals they support advocate for the life they want to live.
This 6-minute video on HCBS provider requirements for residential settings from the Council on Quality and Leadership explains the rules that HCBS providers at residential settings must follow.
This 4-minute video on Rights Restrictions and Modifications from the Council on Quality and Leadership explains what scenarios make restriction necessary, what providers must do before putting a restriction in place and the rights individuals have while under a restriction.
This Centers for Medicare and Medicaid Services (CMS) FAQ on individuals who exhibit unsafe wandering or exit-seeking behaviors answers common questions about complying with the Settings Rule when serving individuals who may wander or seek exits unsafely.
To more fully understand the CMS heightened scrutiny process (pdf):
For a concise summary of the HCBS Settings Rule requirements (pdf):
If you provide services in a small or rural community, or if you struggle in a larger community to find community-based activities or resources to align with the desires of the individuals you serve, consider mapping your community. Here is a resource to help you understand what community mapping means and how to get started.
To read the Settings Rule in its entirety:
For information on the Council on Quality and Leadership's project in Illinois: