The Illusion of Choice in Integration, Inclusion, and Person-Centered Planning

The Illusion of Choice in Integration, Inclusion, and Person-Centered Planning

by Kathy Ware, RN, PHN

Person-centered planning has an elephant in the room that is being ignored. The Minnesota Department of Human Services (DHS) website states, “everyone who receives long-term services can live, learn, work and enjoy life in the most integrated setting. To do this, we must have a person-centered support system that helps people: build or maintain relationships with their families and friends, live independently, engage in productive activities, and participate in community life.” As a community of people with disabilities, we must identify the greatest threat to implementing an integrated, inclusive, and person-centered life.

The number one issue that prevents Minnesotans from living a person-centered life is the absolute lack of competent and reliable staff. There are no consistent and dependable home care nurses available. There are no consistent and reliable direct care staff available. The Minnesota DHS knows this. Home care agencies know this. Case managers and assessors know this. We know this in our community. The absolute truth is that it does not matter how beautiful and wonderfully written the person-centered plan is that is filled with words like integration and inclusion and meaningful life; without the direct care staff to assist in its implementation.

The nursing and direct care staffing crisis is most felt by people with total dependencies in their activities of daily living. These are the people with disabilities that use wheelchairs completely for their mobility, and need help transferrin and positioning. These people are fed, clothed, groomed and provided with assistance in the bathroom by a nurse or direct care staff. When a staff does not show up for their shift for this person, they must have a family member to take over that care; or they must go to the emergency room as they cannot be left alone. There can be no choice, person-centered plan, integration or inclusion without staff. The constant disingenuous mantra that Minnesotans with disabilities have a choice is an illusion.

Minnesotans even have their own taxpayer funded Olmstead Implementation Office that exists to support integration, inclusion and the Olmstead decision. The office website states, “to get to our vision, we know that people with disabilities need choices. Choices about where to live, learn, and work.” A Minnesotan can have a MnCHOICES assessment that indicates 12.5 hours daily of direct support staff and a home care nursing assessment indicating 17 hours per day of direct nursing care. This Minnesotan can choose to try to live independently in their own residence and live out the promises of the Americans with Disabilities Act (ADA), their person-centered plan, and Minnesota’s Olmstead plan for their lives, but what happens when that nursing agency cannot staff the nurse, and the agency cannot staff the direct support staff? What happens when the adult with disabilities has no family that can fill in for the staffing failures? This Minnesotan has no real choice. This Minnesotan cannot have an Olmstead-compliant life. This Minnesotan cannot realize the integration mandate of the ADA. This Minnesotan does not have a real choice. The choice is an illusion. The person’s choice has no real way to come to fruition. This is not a secret. Everybody knows this, but we ignore that elephant in the person-centered planning room.

The State of Minnesota spending is high, but not addressing the staffing crisis. The two-million-dollar Waiver Reimagine Project is alleged to, “support greater choice and control and empower people.” Yet admittedly the Waiver Reimagine Project does not, and was never intended to; address the widespread, well-documented staffing crisis. Waiver Reimagine renames and rebrands the same services currently available. Waiver Reimagine claims under false pretense to extend more choice to people with disabilities, but this too is an illusion as state officials take away options and choice. MnCHOICES is projected to spend $177,664,787 annually. The ever-evolving assessment asks where you want to live and what is important to you. The assessment is alleged to offer a choice on where and how a person wants to live, and to have the right to avoid residential, congregate, excluded facilities for care. Yet again, MnCHOICES does not address the home care staffing crisis and was never intended to. Choice is an illusion without reliable and dependable staff. The elephant in the MnCHOICES assessment room is being ignored.

The State of Minnesota hires for positions called: direct support specialist, human services technician and behavioral support specialist. These positions require no more qualifications than a personal care assistant or direct support in a person’s home. These state positions start at $15.25-$24.19 and offer full state benefits of health care, dental care, holiday pay, paid time off and an array of retirement options. The same providers of direct support in your home are paid $10-$12 per hour with no benefits. This indicates that the State of Minnesota has knowledge of what will reduce the dramatic staffing crisis: higher hourly pay and benefits. It is that simple.

Minnesotans with physical and or cognitive disabilities are quite often involuntarily and indirectly being forced to receive their care in exclusive, congregate, residential settings. Congregate residential care should be available as an option for those who actually choose it. Congregate residential care should never be the only option for a person because they cannot get their staffing needs met in their own home or apartment. Too often people are told, “You can choose to live in your apartment, but we cannot assure staffing or a staffing back up plan.” The choice presented is an illusion. This makes it easy for the professionals to report that people want and choose segregated, isolating, residential settings and indicate that this is for some Minnesotans the “integrated” setting they choose. This is a forced choice due to lack of staffing resources. Minnesota can do better. We as the community of people with disabilities must insist that we have real choices and actual options for care. We need to stop devaluing the ADA integration mandate and Minnesota’s Olmstead Plan by pretending choice exists. We need to hold our professionals accountable to the true meaning of integration, inclusion, and choice.

Ware lives in South St. Paul with her son Kylen, who is 26-years-old. Kylen has quadriplegic cerebral palsy, intellectual disabilities, intractable epilepsy and multiple other medical disabilities. Their main goal is to assure that Kylen lives a fully integrated and included life in his community. Kylen wants the promises of the ADA integration mandate and Minnesota’s Olmstead Plan. He wants to receive his services without being required to use residential, congregate care facilities or day care programs.