Person-Centered Approach Key to Supporting People with Intellectual and Developmental Disabilities

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Person-centered services focus on what’s important to a person with IDD.

It is not uncommon that when an agency or system enters the picture to help a person with IDD, they take over that person’s life instead of supporting it.

Direct support professionals (DSP) provide essential services to people with intellectual and developmental disabilities (IDD), but they’re in short supply. Before COVID-19, almost 46% of DSPs quit their jobs every year.(1) Of those that continue to support people with IDD, many lack the training necessary to ensure they take a “person-centered” approach to support. These two factors place individuals with IDD at increased risk for physical, mental, and emotional difficulties as their personal needs are left unfulfilled.(2)

DSPs provide around-the-clock care for people with IDD, supporting them as they accomplish daily tasks, develop life skills, and achieve other personal goals. It is critically important for these DSPs to allow—and encourage—people with IDD to make choices and retain autonomy over their own lives. Dr. Craig Escudé, President of IntellectAbility, a leading provider of tools and training for person-centered support, says, “It is not uncommon that when an agency or system enters the picture to help a person with IDD, they take over that person’s life instead of supporting it. We need to train more people who provide support to empower people with IDD and help them retain control over their lives.”

Person-centered services focus on what’s important to a person with IDD. According to Patrick Lane, IntellectAbility’s Person-Centered Services Mentor, this approach to support and care places the person’s priorities and life goals at the forefront of their daily experiences. However, it can be difficult to know what these priorities are, especially if the person with IDD communicates without using words. That’s where IntellectAbility’s six discovery skills can help.

Discovery skills help DSPs find out what a person with IDD values, plus what others value for that person. Tools like Communication Charts, Relationship Maps, Good Day/Bad Day, Rituals and Routines, and Reframing Reputations, along with training on creating a service continuum all help DSPs create closer connections to a person with IDD. “We want to enable staff with [person-centered] skills and language that respects the autonomy of those they support”, says Lane.

Most DSPs receive little to no training in person-centered support, and better trained staff are more likely to stay in their current position.(2) Other factors contributing to many DSPs leaving the profession include:


  •     An average hourly wage of about $11/hr.(3)
  •     Lack of affordable health insurance for themselves and their families.(4)
  •     Little to no public recognition for the importance of their role.
  •     Persistent staff shortages that increase workload.(4)

Johnathon Crumley, COO of IntellectAbility, says, “Turnover is high for many reasons. Oftentimes, DSPs find employment elsewhere where the wage is higher and they’re not responsible for someone’s life. And that’s not just the person’s healthcare needs that DSPs need to focus on; it’s also transportation, cooking food, cleaning, and more.”

The need for DSPs is expected to rise by a full 50% by the year 2026.(5)

On the importance of person-centered care, DeAndrea McMullen, Director of Case Management at The Arc of South Carolina, an organization dedicated to promoting and protecting human and civil rights of individuals with IDD, says, “It allows [people with IDD] to feel comfortable with you to provide information that they may not normally share. It builds a real relationship…to keep them included in all decisions about their life. Regarding the proper steps to implementing person-centered practices, we need to first gain traction and increase awareness on a state level. By showing how person-centered care can change lives, we can gain more attention on a national level.”

Expand the Knowledge

According to Dr. Escudé, “the majority of people know very little about the life of people with IDD. It is imperative that the values, wishes, and desires of a person with IDD be considered, and it must be done in a person-centered manner.” A ruling from the Centers for Medicare and Medicaid Services (CMS) now requires person-centered support for those with IDD.(5)

In its ruling, CMS specifies that service for participants in Home and Community-Based Services (HCBS) “must be developed through a person-centered planning process that addresses health and long-term services and support needs in a manner that reflects individual preferences and goals.” The ruling goes on to explain how this “planning process, and the resulting person-centered service plan, will assist the individual in achieving personally defined outcomes…ensure delivery of services in a manner that reflects personal preferences and choices, and contribute to the assurance of health and welfare.”(6)

Choosing a DSP

The right DSP can enhance the life of a person with intellectual or developmental disabilities tremendously. But it can be tricky to make a match that provides the most benefit. In general, when choosing a DSP, people should look for a few key traits:

  •     A willingness to take direction and work cooperatively with the person they’re supporting to provide a good quality of life.
  •     Compatibility with the person with IDD, including shared interests.
  •     The DSP should have received the tools and training they need to provide person-centered support.

Efforts to increase awareness of the troubles people with IDD face—as well as education, better financial support, and opportunities for career advancement for DSPs—can help keep people in support roles longer.

“We need to empower people with IDD with the ability to fully integrate into society. This is the only situation where we tolerate segregation of an entire group of people. Getting better DSPs into support roles for people with IDD can help bring these people back into the world and dramatically improve their lives,” says Dr. Escudé.

About IntellectAbility:

IntellectAbility provides tools and training to agencies, governmental entities and supporters of people with intellectual and developmental disabilities to foster early recognition and mitigation of health risks thereby improving health and wellness. One such tool is the Health Risk Screening Tool (HRST), of which they are the sole developer, producer, and distributor. The web based HRST is the most widely used and validated health risk screening instrument for people with intellectual and developmental disabilities. IntellectAbility also provides numerous health-related and person-centered service trainings for supporters of people with IDD. With unrelenting focus, IntellectAbility works to fulfill its mission of improving health and quality of life for people with intellectual and developmental disabilities and other vulnerabilities. For more information, visit ReplacingRisk.com.

Sources

1.    Hansen-Turton , Tine, and Mike Clark. “Government Must Invest in Direct Care Professionals to Support Those with Disabilities during the Pandemic: Opinion.” inquirer.com, The Philadelphia Inquirer, 26 Mar. 2021, inquirer.com/opinion/disability-support-provider-shortage-pandemic-20210326.html.

2.    Grensing-Pophal, Lin; “The Critical Link Between Effective Training and Retention”; 18 Nov 2019; HR Daily Advisor; hrdailyadvisor.blr.com/2019/11/18/the-critical-link-between-effective-training-and-retention/

3.    Yonkunas, Rachel. “A Workforce in Crisis: Disability Services Are Seeing a Shortage of Direct Support Staff.” fox43.Com, 13 June 2021, fox43.com/article/news/local/direct-support-professionals-workforce-crisis/521-46f28311-b88f-43cf-b0dc-3f7f9349b715.

4.    “Direct Support Professionals and the Disability Community.” The Arc, 8 June 2021, thearc.org/policy-advocacy/direct-support-professionals/.

5.    Courtney , Rep. Joe (D-Conn.), and Shanna York. “Fixing the Disability Workforce Crisis.” The Hill, The Hill, 2 Mar. 2020, thehill.com/blogs/congress-blog/politics/485583-fixing-the-disability-workforce-crisis?rl=1.

6.    Centers for Medicare and Medicaid Services Newsroom; “Home and Community-Based Services: Affordable Care Act Compliance Legislation”; 10 Jan 2014; CMS; cms.gov/newsroom/fact-sheets/home-and-community-based-services | Accessed 12 July 2021

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