Frontline Initiative Working with Families

Beth and Kurt Lidell, and their three sons, Michael, Jeff, and Nate, work together as a cohesive team to create a support plan that will best meet Nate’s needs, a nineteen year old who has Down syndrome. We interviewed two members of the Lidell family, Beth and her eldest son, Michael, to share their powerful story of how family involvement has helped in building strong partnerships with the Direct Support Professionals (DSPs) who support Nate in their family home. As Beth emphasized, communication is key. Honesty and trust is really at the core of the relationship between the DSP and the family. The Lidell family respects the people that come into their home, and expect DSPs to respect their home, their family, and who they are.  

What is it like to have DSPs come in and out of your house/life? How has your everyday family life been affected? 

Michael: We have had DSPs coming and going since Nate was three. At that time I didn’t get that attached to DSPs just because they weren’t there for me, they were there for Nate. I am now more involved with DSPs and have grown to appreciate those who stay. Instead of, “Oh whatever, I’m Michael, nice to meet you,” it’s “I’m really sad that you’re leaving. Good luck with your next job”. 

Beth: I think my biggest struggle is just to find DSPs who stay around and who are really invested in my son and don’t just see it as a part-time job. We stayed away from making a “revolving door” of staff for the benefit of my other children. It’s really hard so sometimes we went without staff just to take a break. We did what a lot of people are told not to do, we incorporated them into our family. We had one DSP that stayed with us for six years. We would take her with us if we went on a vacation or to the cabin and we bought her birthday and Christmas presents. We just really treated her as a family member. For her to be in our home, we needed to incorporate her into our family for our other children so it wasn’t seen as an employee or just somebody who comes and goes. By incorporating her into our family, it made it more of a natural thing. We try to do this with all of our DSP staff but this one really stands out as a great memory for our family.

How do you communicate your expectations to DSPs? 

Beth: Where I really focus on is how I expect their interactions to be with Nate. I expect them to be a “helper friend” and engage Nate in the community and learn from them, not just a person babysitting a 19 year old. I also lay out examples of what I do expect and what I don’t want. For example, I don’t want DSPs on their cell phone texting or talking with their friends. I have found what happens is DSPs sit on their phones and text or talk with their friends while Nate just sits there. Or shopping with Nate, which he hates, but they see it as an easy way to get their errands done. Would you describe something a DSP did that demonstrated they really understood your family? 

Michael: I’ll use the DSP that was with us for six years as an example just because she had the biggest influence. Her name was Heather. When she came in, she came from a very strong Christian background, which is something that is important to us. She was a college student going into early education, she really understood kids, and she had the patience to really get along with Nate. The first couple of months she would ask questions just to make sure she was doing everything the way we expected. Then it evolved to a point where she knew Nate’s routines just as well as we did. She knew the foods that he liked or didn’t like just as well as we did. So the more time that was spent, the more familiar she became with Nate’s routines and preferences. The biggest success was that Nate became really attached to Heather and looked forward to when she was scheduled and felt like he had a friend coming over to be with him. Friendships were something that was missing from Nate’s life. Nate looked forward to seeing his friend Heather versus the DSP Heather. 

Beth: Heather was like a dream come true, she was unbelievable and I called her my angel from heaven. If Nate was having a hard time, she would come and get me. If I was busy with one of my other kids, she would take my place there. Or, if I was busy cooking, she would do that so I could go tend to Nate. It wasn’t like “here’s my role, here’s your role”. It was more like “I’m here to support the family,” and I wish every DSP could understand that.

Michael, why is it important to you to be involved in your brother’s support team? 

Michael: He’s my brother. As a family, we really do know what’s best. Obviously, there’s a mom relationship and everybody listens to mom; nobody argues with mom. That can be a bit intimidating at times for new staff. They don’t always feel like they can express concerns or something they’re frustrated with like a routine or something they just don’t get. They may not always feel comfortable going to our mom because that’s like going to “mama lion”. So it’s easy for me to step in as the brother, it’s more of a casual relationship. It offers that dichotomy of mom being the one who makes the rules, runs everything, does all of the scheduling as the big boss. Then there’s me who is the intermediary and can go through the little details, provide that personal support, and provide that unique perspective of a brother relationship versus a mom and son relationship. That is really important because Nate doesn’t need a second Mom. 

What would you say to a DSP who is interested in working in a family’s home? 

Beth: It takes a higher level of responsibility and maturity to work in a family home because DSPs have a lot more freedom. Families need DSPs who are self-motivated, responsible, reliable, and honest. Also, I think DSPs need to look at ‘is this a good fit for me?’ If a family smokes and you don’t like cigarette smoke, then that is a really important thing to consider. In my family, we’re Christians and we put it right out there. Some DSPs may be uncomfortable to be in an environment where we play Christian music and watch certain TV shows. It is important for DSPs to really understand who they’re working for and what that family’s values are, to find out if it’s a good fit or not.