A plea for community care | Arkansas Blog

A plea for community care

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As testimony continues in the federal lawsuit over the operation of the Conway Human Development Center, I have a letter to share from parents on the side of more community treatment for people with developmental disabilities. To date, most public comment has come from families who are satisfied with care of relatives in human development centers and critical of the Justice Department lawsuit.

The letter is from Jeff Cook of Little Rock, who has a child who has been a state waiting list for services for three years. He works in an advocacy group. The state is fighting to preserve the status quo. Expanding community services costs money. The Justice Department believes they are better settings for many residents now institutionalized. The testimony in the government's case so far has been dramatic.

I am hoping you will consider telling your readers about the plight of the many Arkansans with developmental disabilities who are currently being denied services for years by our state, because they chose to receive services in their homes and communities rather than being confined in one of the state's human development centers.

Everyone is aware of the civil suits filed by the U.S. Department of Justice (USDOJ) against the state and the poor treatment of residents of the state's human development centers. To date the state has spun the story that they are just standing up for the families who chose care in a human development center and that USDOJ just wants to close them.

What is not being told is that the state is not standing up for families who choose to have their loved ones served in their homes and communities. Our state has failed to provide adequate funding for the Medicaid Alternate Community Services Waiver (DDS Waiver) to serve Arkansans with developmental disabilities families who choose to receive services in their homes and communities rather than being confined to a human development center. As a result those choosing to be served by the DDS Waiver are placed on a years long waiting list. At present over 1500 individuals are on this waiting list which continues to grow. Those recently added to the list will have to wait over a decade to receive services without more funding for this waiver. The years long wait to receive community based services is steering some families to the states' institutions (Human Development Centers or HDC's) to receive help in a timely manner even though their loved ones could be served in a less restrictive environment in their homes and communities.

Being offered a choice, but being denied one of the choices is no choice at all. Being put on a waiting list is not a service. Further, both the Americans with Disabilities Act and the Supreme Courts Olmstead decision say individuals with disabilities have the right to receive services in the least restrictive and segregated environment, so requiring unnecessary segregation and confinement in an institution to receive services violates Federal law.

The DDS Waiver is one of six Arkansas Medicaid Waivers. None of the other waivers have a decade long waiting list. Can you imagine what would happen if you learned your elderly family member was going to have to wait over a decade to receive services they need today to keep them from being confined to a nursing home? Why is this happening to individuals with developmental disabilities? Is it because many lack the ability to speak up for themselves?

My name is Jeff Cook and I am the parent of a child with a developmental disability. I am also serving as the state representative for NOEWAIT, an organization dedicated to end years long waiting list for individuals with disabilities to receive home and community based services. For the past two years I have advocated for ending the years long waiting list for the Alternate Community Services Waiver (DDS Waiver) in Arkansas whose purpose is to provide services to Arkansans with developmental disabilities in a less restrictive and segregated environment in their homes and communities. Unfortunately, the waiting list for the DDS Waiver has continued to grow due to our state's failure to provide adequate funding to provide services to those requesting DDS Waiver.

I hope you will tell this story by speaking out for these most vulnerable Arkansans, many of whom cannot tell the story themselves. I am hopeful if their story can be told, it will create the public's awareness and create political pressure for our elected officials to correct this problem that is growing worse day by day.

Jeff Cook

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