Summary
Many people who have intellectual and developmental disabilities (IDD) are left out of conversations about their lives, services, and supports. Person-centered practices were made to put the person, their culture, and their wants and needs at the center of their chosen life.
The Arc Minnesota believes that person-centered practices must respect what each individual wants and needs. These practices must respect what is important to and for each person to live the life they want.
Person-centered plans must be honored. Individual’s services and supports must help them achieve their goals. If the plan, services, and supports do not help the person get what they want and need, they should be changed.
Systems and social change rooted in person-centered practices will:
- honor diverse identities of people with disabilities
- respect their lived experience
- help ensure their individual goals are met
- support their hopes and dreams in life
Issue
Person-centered practices were made to put people with disabilities, their culture, their wants, and needs at the center of their chosen life. The goal was to support people’s every day choices in ways that are meaningful to them.
That does not always happen.
Many people who have intellectual and developmental disabilities (IDD) are left out of conversations about their lives, services, and supports. Because of ableism, prejudice, and negative stereotypes, some people assume that individuals with IDD cannot make choices about what they want, and what is important to them. People with IDD are not always told about all their options related to formal and informal supports that could help them achieve their goals.
For the most part, our formal service system offers one-size-fits-all programs and services that do not reflect the true spirit and purpose of person-centered practices. Many professionals working with disabled people focus on what they cannot do, rather than their strengths, abilities, and talents.
The state of Minnesota does not have a way to make sure that person-centered practices are used. There is no oversight to make sure that formal services and supports are person-centered. There is nothing to hold service providers accountable in making sure that person-centered goals and plans are respected.
Some federal and state policies even require that person-centered plans are made for people who access long-term services and supports. Because of this, some person-centered plans have become another item to cross off in a long list of requirements. Mandatory plans often focus on “fixing” the individual, and frames their life in the context of the formal service system. They do not focus on what the individual really wants.
All of this goes against the true spirit of person-centered practices.
Family members, service providers, support professionals, lawmakers, and state agencies need to do more to promote person-centered practices and individualized supports that help people achieve their goals and dreams.
Position
The Arc Minnesota believes that all people have the right to:
- make decisions
- have control in their lives
- advocate for themselves
- get support from trusted allies as they advocate and make decisions
Person-centered practices must respect what each individual wants and needs. These practices must respect what is important to and for each person to live the life they want. Person-centered practices should be aspirational – focused on what each person wants to strive for in their life.
Person-centered practices must:
- come directly from the individual, with support from other trusted people in their life as needed
- respect individual desires, interests, and dreams
- support informed choice in ways that are most accessible to the person
- frame the person’s needs around what is important TO them, not just what is important FOR them
- support each person to build relationships that are important in their life
- foster opportunities for belonging in the community
- end isolation, segregation, disconnection, and oppression that the person experiences
- promote natural, community solutions and not be limited to what currently exists within the system
- respect and value all parts of the person’s identity, including:
- culture
- ethnicity
- language
- religion
- gender identity
- sexual orientation
- use trauma-informed approaches to proactively identify areas where a person may need additional supports of their choice to ensure as much stability as possible through challenging life events. The person’s confidentiality, and boundaries around who receives this information, must be respected
- honor that people learn how to make decisions by taking risks, and that mistakes can help them learn and grow
People who have disabilities and all others involved should have accessible information that helps them learn about person-centered practices. This can help make sure they fully understand and engage in processes like person-centered planning.
Person-centered plans are one important part of person-centered practices. Plans must be:
- developed using methods that are accessible to and preferred by the person
- available to the person whenever they want
- updated if or when the person wants to change any goals
Plans must also outline who will take actions to support people to achieve their goals. As much as possible, these should be trusted supporters chosen directly by the disabled person.
If an individual accesses formal services and supports, the plan should include benchmarks to show how service providers and support professionals will help them achieve their goals. If the providers and support professionals are not helping the person achieve their goals, the person should be able to access different services and supports of their choice.
Roles, responsibilities, and specific timelines should be made clear at the meeting. A plan for follow-up and evaluation should be set, understood, and acted on by everyone in the planning process.
Plans should be evaluated based on the person’s desired timeline. We recommend evaluation at least once every year.
Just making person-centered plans does not go far enough to protect and respect individual’s choices. People must have the resources, infrastructure, and support to pursue their goals. This will require broad social change centered in person-centered practices.
People with disabilities must be able to:
- pursue inclusive higher education
- explore internships and jobs based on their skills, talents, and interests
- build careers that are meaningful and pay livable wages
- live in affordable, accessible homes of their own
- pursue relationships with other people of their choice
- and build belonging in their communities in ways that are inclusive and meaningful to them
- Our entire service system must also be redesigned in ways that help people achieve their individual hopes and dreams, rather than providing one-size-fits-all models.
This will require:
- changes in funding for current disability services and supports
- investment in self-directed support options that are flexible and tailored for each person
- opportunities for people to explore new and different types of services and supports that work best for them – not just services that are currently available, or most frequently offered
- accountability for service providers and support professionals who are supposed to help people achieve their goals
- more options for support in and outside of the formal service system
- support from lawmakers, state agency representatives, and disability service providers who have a deep understanding and commitment to person-centered practices
With this shift in our system, we will also need to design quality measures that are based on:
- each person’s desired life outcomes
- the extent that people are living the life they want
- the extent that services and supports of the person’s choice help them live the life they want
More about quality services and supports can be found in The Arc Minnesota’s position statement, Quality Services and Supports.
Systems and social change rooted in person-centered practices will:
- honor diverse identities of people with disabilities
- respect their lived experience
- help ensure their individual goals are met
- support their hopes and dreams in life
Approved by The Arc Minnesota Public Policy Committee on December 7th, 2021.
Approved by The Arc Minnesota Public Policy Committee – August 19, 2015.
Approved by The Arc Minnesota Board of Directors – September 12, 2015.
Approved by Delegates at The Arc Minnesota Annual Meeting – October 23, 2015.