Making a Plan for Your Child with Special Needs' Life

Person-Centered Service Plans allow families to have control over how a child’s life will progress, from community integration to living situations to personal enrichment.

By Jacqueline Neber April 26, 2019

In Susan Platkin’s eyes, self-direction has always been the only acceptable path for her daughter Ruth. Ruth is 32 and has intellectual disabilities and bipolar disorder, and despite her unique challenges now lives in an apartment in East Northport, not far from Platkin, with a roommate and staff—and is loving it. Platkin does not believe this accomplishment would be possible without self-direction or Ruth’s Life Plan, a newer Office for People with Developmental Disabilities service that gives her an active voice in her future. For parents of children with special needs, the future can be frightening instead of exciting—but Life Plans, also called Person-Centered Service Plans, are a way to ensure children with disabilities can tackle adulthood and have access to the same fulfillment as neurotypical children.

Life Plans focus on giving the individual and family power—to choose services, living environments, methods of community integration, and more that best fit the individual’s wants and needs. Life Plans are based on identifying and accomplishing goals, building and maintaining fulfilling relationships, mitigating risks, and creating lives that are just as full as anyone else’s.

“My daughter is actually, despite her really significant intellectual disabilities and her really major problems with her bipolar disorder, living in an apartment with a roommate and staff, which she loves. And she’s done better than I ever could have imagined. She enjoys cleaning her own place, which she never did at home,” Platkin says. Speaking to the importance of a Life Plan, she says, “You can’t just look at now. You have to look at where [your child] wants to be.”

The Values Behind Life Plans

Carol J. Blessing, the senior extension associate at Cornell’s Yang-Tan Institute on Employment and Disability, helps explain the ethos behind person-centered planning. From its inception in the 1970s, this method of helping individuals map the paths of their lives has been rooted in the simple concept that people with disabilities are people, same as anyone else.

“[Person-centered planning] was invented as an opportunity to listen differently to families and to people with primarily intellectual development disabilities so that they could really orchestrate how they wanted services to respond to what they wanted in their life,” Blessing says. “Which was a) putting people on the same page, and b) imagining a positive and possible future for people.”

This approach is different from services that are based on medical models “that presume that the disability is the person, and that the disability needs some kind of cure or fixing,” she explains.

Person-centered planning operates on three principles. “[The first principle is that] everybody is born with a purpose in life. With gifts, talents, with potential. That’s a really important principle,” Blessing says. “The second is that everyone has the right to equal access to opportunities to explore and discover and realize that purpose, and their strengths, and their gifts, and their talents, and their capacities. And the third principle is that everybody has a responsibility to give of those gifts—use their purpose to the benefit of society.”

Getting Started

Before Life Plans, adult children with disabilities and their families could develop Individualized Service Plans, which gave consumers (adult children with disabilities) the power to clearly articulate a plan for their future and include safety measures.

Life Plans are a new New York state service that everyone in the OPWDD system can now participate in. The benefits Life Plans afford are similar to those consumers receive through self-direction, an OPWDD service that gives consumers and their families control over supports, staff, services, and more through creating a budget based on the consumer’s DDP2 (Developmental Disabilities Profile) score. This budget allows families to work with the child’s Circle of Support to create a life they will enjoy through services, support, and programming.

The Life Plan process can begin once the family completes a DDP2 or another OPWDD-approved assessment, such as the Coordinated Assessment System (CAS) or I Am assessment. These assessments are designed to help build a robust and comprehensive Life Plan.

Though initial meetings can last a few hours, Ruth only attended her own initial Life Plan meeting for ten minutes, Platkin says. But that didn’t matter. Her presence was enough to launch a conversation about her future that helped determine her ideal living situation, employment and community integration possibilities, and potential for growth.

This conversation facilitated a Staff Action Plan, which details how Ruth’s staff will help provide services and support. The Staff Action Plan translates into Service Delivery, which is reviewed, evaluated, and revised over time. Each individual’s service plan is reviewed twice a year or when change is needed.

Platkin says she has watched Ruth’s vocabulary, organization skills, and confidence grow over time as a result of self-direction and her Life Plan. Ruth gets involved in her community by working at Walgreens for two hours each week.

“To us, it might look like a short amount of time,” Platkin says. “But a big part of Ruth’s identity is that she works at Walgreens. She loves it. The growth in her as a person, as herself, has been just remarkable. And I have control over the situation [as her parent].”

Identifying and Reducing Individual Risks

According to the OPWDD, a true person-centered Life Plan assesses risks to the individual that are real and tolerable–not any risks that are potentially imagined, or that acting on would interfere with life.

Individuals or parents must complete a risk assessment sheet that evaluates the individual’s access to providers, trusted support, and more. The sheet asks questions about money management, living situations, physical and mental health care, potential environmental dangers, protecting themselves, and their appearance and hygiene.

Platkin says that for Ruth, what is written down in the Life Plan matters less than whether the people who are working with her every day make sure she is safe. Ruth has been parasailing with her sister, runs half marathons, and encounters risk every day.

“You really have to accept a little bit of risk in your kid’s life for them to grow. That’s how we all grow,” she says. “As far as what’s in the Life Plan, it’s important to think about those issues, but what’s really important is who is with the individual.”

Potential Drawbacks of Life Plans

Not all parents feel like the service will be beneficial. Amber Decker, a senior family peer advocate at Special Support Services and mother of a 13-year-old boy with autism, warns parents that Life Plans could contain significant drawbacks.

“The sad part of this whole transition from an Individualized Service Plan to a Life Plan, is that person-centered service planning is not something that the state has been prepared for, nor have they provided any guidance or training to persons who are supposed to be participating,” Decker says.

She adds that Life Plans are developed from assessments that might not tell the most complete, accurate story of the individual—such as one assessment that contains 1,600 questions.

“The Life Plan is [auto]populated. It is not something that the individual who the plan belongs to has much of a say in as they should, to answer some of the things that are now relevant. Such as, are you happy where you now live?” Decker says. “If you have a nonverbal individual who doesn’t understand abstract concepts like this, there’s got to be a better way that you capture that information or offer solutions. This to me is a huge issue because there’s no clarity from OPWDD, from DOH, on what to do when you don’t even reach the point of an agreement. It’s a total mystery.”

James Edmondson, a Forest Hills pediatrician who is his teenaged sons’ self-direction parent-broker, echoes Decker’s sentiment about lack of communication.

“A number of people have gone the correct route but have encountered issues with lack of communication which has caused delays,” he says. “Beyond that, even if the family goes entirely through the Life Plan process and gets authorization for home and community-based services, many families find it difficult to recruit direct service providers since there is a shortage of workers related to low wages.”

Educating Parents About This Program

Since Life Plans are so new, many parents aren’t aware they can create one—or how much effort is required to build one. Many parents also don’t take advantage of self-direction. Susan Platkin got involved in the disability community when Ruth was about 3½, participated in Partners in Policymaking (a New York state course that teaches advocacy to parents), and became an advocate for inclusion in schools and the community. Platkin attributes learning about self-direction in the 1990s to her involvement. She now is a member of the advocacy committee of the New York State Self Determination Coalition, a volunteer group of parents and professionals who raise awareness of self-direction.

But if parents aren’t involved like she was, Platkin says, they won’t so easily come to know about important services. There are other reasons why they might not elect self-direction or Life Plans as well.

“I think a lot of parents are afraid to do this because they’re worried about the future. Families have a pretty large role in making self-direction work for people with very significant support needs,” she says. “For a lot of people involved in this, their kids really, intellectually don’t understand the concept. They’re just living the life. So I think a lot of parents are really worried about what’s going to happen when they’re gone. We’re all gonna go someday, and there really have to be structures in place that support the person when [that happens].”

Circles of Support are theoretically, Platkin says, supposed to help resolve these fears.

“There are definitely people who are able to do that, who have large strong families, and large social support networks,” she says. “But I think a significant number of [families] really don’t have this. Even if you have another child, you don’t really want to put that burden on them. I think that does stop a lot of parents also. And that has to be resolved.”

Barbara McNamara, Ruth’s self-direction broker, says there are steps to take before self-direction and Life Plans work for everyone the way they are intended to.

“I often hear parents saying, that’s great for those children, those adult children, but not mine, because my child has far too complicated a life. Or I hear parents themselves have too many other obligations than focusing on the self-directed life of their child,” she says. “We all have the right to be self-directed. I think what we need to do is build stronger circles, I’ll say, around the people who need them.”

McNamara is the director of SMILE (Support My Independent Life), a collaborative broker organization that supports nearly 190 families. Through SMILE, she works with multiple care managers and care coordination organizations to see how people approach and execute Life Plans in different ways.

Regardless of how parents learn about and take advantage of Life Plans, the bottom line is this process creates a way for individuals with disabilities to have a hand in directing their services, be fully integrated members of the community, and break out of the boxes, as Carol Blessing describes, they are sometimes confined in because of how people perceive disabilities.

The ideation behind person-centered planning creates valued outcomes—social roles that people with disabilities can inhabit that are meaningful to everyone, and that they might otherwise not get a chance to inhabit.

“[We think about], how do we use a resource like person-centered planning as a way to tap into [the individual’s] gifts, their purpose, their skills, their talents…” Blessing says, “in ways that allow services and supports to open up avenues in [the community] where those gifts can show other people roles they will recognize as valuable.”

Ruth’s path can be seen as proof of concept. Her living situation, community involvement, and blossoming have showed Susan Platkin that Ruth can achieve more than ever thought possible.

“People think that people with intellectual and developmental disabilities plateau [at a certain point],” Platkin says. “A tree might only reach one height, but the branches keep spreading.”