Posted on June 28, 2018

By Mary Kay Rizzolo, CQL President and CEO

If you’re going through a tough time in your life, who do you talk to? When you accomplish something you are proud of, who do you share that with? In cases where you truly need someone, who can you count on to be there? These are just some of the questions we explore with the Personal Outcome Measures®, to determine who is part of someone’s natural support network. This may include your family members and close friends who are there for you when you need them, acting as a safety net with potentially lifelong support.

As you’ll read in this edition of Capstone, while the vast majority of people receiving human services have a natural support network in their life, many feel that it’s not enough. The network may be there, but people are just not having as much contact with their network as they desire. This is especially significant as we find the important connection that natural supports have to other quality of life outcomes. For example, those who have a natural support network are 2.5 times more likely to be treated fairly.

Considering that they’re so vital, how can people identify, build, and maintain natural supports? How can organizations confront the barriers that may arise? What tools are out there to help in these efforts? Before we get into the answers to these questions, we’ll turn to the data to get a better idea of how people receiving supports are impacted by this outcome.

Connections To Quality of Life

By Carli Friedman, CQL Director of Research

According to CQL’s PORTAL Data System, of our 2015-2018 sample of more than 4,000 Personal Outcome Measures® interviews, 91.5% of people with disabilities had a natural support network. However, many people with disabilities felt they did not have enough contact with family, friends, or others in the community (see figure below). For this reason, only 46.6% of people had the natural support networks outcome present.

Do you have enough contact with?

In terms of organizational supports:

• 91.4% of organizations have identified the person’s natural support network
• 83.5% of organizations know the status of relationships within the person’s support network
• 78.6% of organizations provide support for the person’s relationships within the network, if needed and requested

However, fewer organizations put all three of these supports in place simultaneously, leading to only 63.4% of people with disabilities having organizational supports in place for natural support networks.

Impact of Natural Support Networks on Quality of Life

In order to explore the relationship between natural support networks and quality of life, we ran binary logistic regression models to see the impact of having natural support networks on each different indicator of quality of life.

Findings revealed natural support networks significantly increase people with disabilities’ quality of life in every single area (see figure below). For example, people with natural support networks are 2.2 times more likely to exercise their rights compared to people without natural support networks. People with natural support networks are also 3.2 times more likely to perform different social roles when they have natural support networks.

Likelihood to Have Each Outcome Present When A Person Has Natural Support Networks

The benefits of natural support networks are wide reaching, many people with disabilities did not have outcome present for natural support networks. This demonstrates why it is critical for organizations to put supports in place to foster these connections. Whether a person resides in a big city or a small town, there inevitably will be barriers they face in ensuring supports are in place to have natural support networks present in their lives.

Overcoming The Hurdles

By Jill Anderson, Assistant Director, LIVE, Inc.

Trying to balance all of the Basic Assurances® factors can be a juggling act. One of the toughest areas can be maintaining or establishing Natural Support Networks. This is simply because it isn’t entirely in our control as Community Support Providers (CSPs). Success in this area relies heavily on the willingness of others wanting to become a natural support and it also involves us as an agency discovering ways to connect to those natural supports.

To give some background about LIVE, Inc., we are a small agency in a small community. The population of our town is around 1,300 and we are located in a very isolated area in northwest South Dakota. What does this mean? We are at least 168 miles from the nearest Walmart or McDonalds, but more importantly, just as far from the nearest Community Support Provider in South Dakota. We are also at least that far from the extended family of most of the people we support. The majority come to LIVE, Inc. via an institution, with little or no family connections. In our small agency, 56% of people receiving support from LIVE, Inc. are Native American while in 2016, compared statewide to 14.6% of South Dakotans who identified as such. In that aspect, we work to not only establish Natural Support Networks, but also help keep people connected to their heritage.

Getting Creative With Different Types of Connections

In the cases where a person we support already has established family connections or natural supports, it makes our job that much easier, as we work to maintain that connection. This can be done by diligently supporting that relationship. Direct Support Professionals (DSPs) employed at LIVE, Inc. do an amazing job at making sure phone calls are made, letters are written, cards and gifts are sent – ensuring family members know it’s important to the person we support to re-establish or maintain those connections. This may include taking the time to go as far as 200 miles to visit families. We believe that this is part of our success in these relationships continuing. In reality, it can be hard for families to make the trip to visit here so they are grateful that we make that commitment to support their family member to travel to see them. It also gives the person supported a chance to visit many family members and see their home country.

On the other hand, the more challenging part is when there is little or no family history. At this point, we become part-DSP and part-investigator. If the person we support uses words to communicate, it takes some time in visiting with them about their history and to get some names that we can use as a starting point. If they do not use words to communicate, it may take digging into their history and researching the path they have taken to get to LIVE, Inc. Thanks to the internet, we can sometimes go off one name and make a contact that will lead to another contact. It is very important to respect the people we are connecting with. We have no idea what the history of that relationship is, and it is imperative that we keep it positive. Sometimes it is like a puzzle that we have to try to figure out, to see where the pieces will fall into place. With patience and hard work by our staff, we have had great successes in re-establishing family connections. We keep the focus on the future of that relationship and make it a positive experience.

Even though we work hard to establish and maintain these Natural Support Networks, there are some situations when natural supports aren’t going to be there. In this case, it’s time to get creative. In the Native American culture, family can be a broad term and the Tribe itself will feel like family to people even if they don’t personally know the other person. We find it’s important to maintain that connection with a person’s Native American heritage. DSPs research the POW-WOW schedule and travel many miles to support people to attend local POW-WOWs. Also, there are great Native American Cultural Centers on the reservation. When going to visit family there, we take other people supported along to visit the cultural center. Recently, the local high school had a hoop dancer in assembly. The school was generous enough to open up the invitation to people we support to attend. Connection to their culture is very important to the identity of Native Americans both personally and spiritually. Finding these events to participate in is so important. We also work with people to ensure that their homes reflect that heritage with Native American art and decorations.

Signs of Success

Connecting with Natural Support Networks is not always an easy task. What makes this factor a success in our agency is observation and listening to the people we support, as well as listening to the community around us. We have had great success at just observing the community members that approach people when we are around town. This may be at a basketball game, church, or the local grocery store. If those community members take time out of their day to visit, then there could be potential for relationship-building. Just recently we established a simple church connection with a local guy that goes with one of the people we support to shoot hoops. It is so important to the success of our employees and people supported, that they have those connections where their interaction is on a level of friend and companion – not a paid position. Not everyone embraces a relationship, but when a good connection is created, it will be well worth the wait.

Truly, the success of our continuing ability to support people to connect to Natural Support Networks, in whatever form that it is, is solely based on the great network of DSPs and staff that we have. It is a goal that we strive to achieve as a whole agency to ensure all those avenues stay open to helping the people we support live a full and happy life.

Tools To Strengthen Natural Supports

By Kristi Greenfield, Outcome Facilitator & Friendsfirst Program Coordinator, Marcfirst

Some years back we at Marcfirst, a CQL accredited organization in Normal, Illinois, saw that Direct Support Professionals (DSPs) seemed to have a hard time understanding follow-up questions in Personal Outcomes Measures® (POM) interviews about peoples’ natural support networks. Marcfirst has always placed an emphasis on trying to help people build their natural support networks and did have staff who supported the building of those connections, although they just did not understand the term natural supports. A discussion with the Quality Enhancement Team led to a focus group being formed which included DSPs and people supported. The result – a Natural Supports Network Policy in a user-friendly format including pictures, was created in 2008. The addition of pictures increased the accessibility to the people Marcfirst supports and more fully-engaged staff. People really like it because it is so much more fun to read, and they really like the pictures. We have talked about trying to make more policies look this way.

It has been important to make sure all staff understand what natural supports and social capital are – that they are not some fancy terms only for administration to worry about, but rather how they can be part of helping the people we support develop and maintain connections that are important to them. We make sure to reinforce the terms and their value in official and unofficial communication and documentation. Another tool in the Marcfirst toolbox that facilitates the cultivating of Natural Support Networks is something known as the Snapshot. When we work with people on their Snapshot, a document to facilitate person-centered planning, we talk about all the important people in their life, so we use the term natural supports at that time.

Examples of natural supports in action:

• A gentleman we support likes to stay very active in his church. One of his Sunday school teachers has picked him up every Sunday for church for many years since it is very difficult for our staff to do that on a Sunday morning based on the other people living in the home. Without this natural support, he would not be able to participate in church activities as he desires.
• One gentleman we work with has great natural supports at Country Financial. He has told me that on multiple occasions that his coworkers have invited him to special lunches outside of work that are typically held between the employees of his department. They always make sure to reach out to me and tell me when their lunch will be, and that one of them would be glad to transport him home afterward. He loves these lunches, and it really makes him feel like part of the team since it’s something exclusive they always do together.
• A lady we support has been attending a WERQ dance class at the gym where she is a member and she has made friends with a lady in that class whose husband drives the bus she often uses. One week, the person did not attend the class and her friend was looking for her because she missed her.

A Commitment to Connecting

Marcfirst works to connect families and people with developmental disabilities to their community, to become a bridge to a community where all people can pursue and achieve their dreams throughout their lives. Making the Natural Supports Network Policy accessible and usable by staff and the people we support has increased people’s quality of life.

Connecting, and re-connecting, people to their family is critical. Searching for family members can be quite a process. We have used a variety of ways to search, such as a death index for the county of the person’s birth and a historical index website. While the internet certainly makes searches much easier, it still does take a commitment of time and persistence!