Samantha A. FAQs

6/2/2011
FAQ

The complex case of Samantha A. could signify the restoration of services for thousands of kids with disabilities. What exactly does that mean?

Who is Samantha A.?
What happened with the 2005 rule change?
What is Medicaid Personal Care? (MPC)
Why do children who live with their parents need Medicaid Personal Care?
Which rules were found invalid?
How was the rule challenged?
How will this change the CARE assessment?
Who will this help?
When will these changes go into effect?
What can I do if I believe my child’s MPC hours were wrongly reduced?
My child is on a waiting list for services from the Division of Developmental Disabilities but receive no paid services. Will this decision help us?
How does providing community support save the state money?
How will the state afford this?

 

Who is Samantha A.? 

Samantha A. is a teenager with Down syndrome who lives at home with her mother and sister, attends her local high school, sings in her church choir, and enjoys her family, community and friends. Before 2005, Samantha received 90 hours of Medicaid Personal Care each month, which helped Samantha with self-care and independent living tasks. After a 2005 rule change by the state, Samantha’s hours were cut from 90 to 39.  

With the 57% reduction in Medicaid Personal Care, Samantha lost her care provider altogether at a time when she needed significant support.  Her condition deteriorated substantially. Her mother appealed the loss of hours.

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What happened as a result of the state's 2005 rule change?

The 2005 rules reduced personal care service hours of all children under 18 who lived with their parents, on the assumption that if a child lived with his/her parents, the child’s needs were met. There was no evaluation to make sure the needs of each child could be met with fewer personal care hours. 

The assessment used to determine needed supports automatically reduced Samantha’s hours of personal care. Because of the reduction in services, Samantha’s family, like so many of other families who lost personal care hours, struggled to secure appropriate supports for family members with disabilities.

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What is Medicaid Personal Care?

Medicaid Personal Care (MPC) offers in-home assistance for grooming, self-care, laundry, cooking and other personal care tasks. People with developmental disabilities, who are eligible for 24-hour care in an institution, but choose to live in the community, can get state supports through what is called a home and community-based waiver.  MPC is one service offered through this waiver.  

The number of MPC hours a person gets is determined by a state assessment, which is conducted by a case manager from the Division of Developmental Disabilities (DDD). This is commonly called the CARE Assessment (Washington Administrative Code or WAC 388-828.)

Samantha is eligible for institutional care, but instead, with support from MPC, Samantha’s mother has raised her at home with her younger sister. Samantha’s MPC service is very important because it helps Samantha’s family function and boosts Samantha’s independence, keeping her connected to her community.

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Why do children who live with their parents need Medicaid Personal Care? 

The Court in Samantha A. recognized that some children with disabilities need more than just a parent’s help to maximize their potential and grow into healthy adults.

Sometimes it takes more than the parent to keep a child in the home. Children enrolled in Medicaid are entitled to the care they need, including Medicaid Personal Care.

In Samantha A the Washington Supreme Court recognized that automatic and unchallengeable assumptions about the amount of personal care any particular child needs cannot be made solely based on the fact that a parent lives with the child.

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Which rules were found invalid?  

The rule challenged in Samantha A was Washington Administrative Code (WAC) 388-106-0213, which stated that in determining hours with the CARE Assessment, needs are marked as met or partially met over three-fourths of the time when an child with a disability lives with a legally responsible natural/step/adoptive parent.  Under WAC 388-106-0130, DDD automatically cut the number of personal care hours because it assumed that certain needs of the child were informally met by the parent. 

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How was the rule challenged in court?

Samantha won her case in Thurston Superior Court.  The Superior Court found the automatic reductions were invalid because they violated federal Medicaid law. The State decided to appeal the Court’s decision, which meant DDD could continue applying the rule to other children.  Rather than waiting for the case to go through the Court of Appeals process, the Supreme Court of Washington agreed to take the case directly from Superior Court because this was an issue of ‘broad public import.’ 

The Washington State Supreme Court heard oral arguments in November 2010, and rendered its 5-4 decision in May 2011, striking WAC 388-106-0213 as a violation of federal Medicaid law and WAC 388-106-0130 to the extent that it authorizes WAC 388-106-0213. 

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How does this change the CARE assessment?

What the Division of Developmental Disabilities will do to the CARE assessment remains to be seen, but it will have to change its assessment process to remove automatic reductions based on informal supports that are not quantified.   To replace the automatic reductions, the Department may develop different rules, which must be made available for public comment. 

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Who will this help?

Disability Rights Washington believes there are 3000 children who receive Medicaid Personal Care and may have experienced a reduction of hours based on informal supports.  This will also benefit children who obtain MPC services in the future.  

Unfortunately, this case does not help children or adults who are not on the waiver and are waiting for services.

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When will these changes go into effect? 

DDD will need to take corrective action to change the rules, and the way the CARE assessment is administered, so that automatic reductions to MPC services are not generated based on assumed informal supports.

This may take some time, but according to Samantha’s attorneys Eleanor Hamburger of Sirianni Youtz Spoonemoore and Susan Kas of Disability Rights Washington, the State should act promptly. 

“Samantha’s case was not unique,” said Hamburger. “All children who received MPC services since 2006 suffered a similar unfair reduction in their personal care benefits. Many experienced even greater cuts than Samantha did.”

“Thousands of children have gone without the personal care they have been assessed to need during the years that this litigation moved through the court system,” said Kas. “Now that there is a final ruling, DSHS should move quickly to fix the MPC assessment process for kids.”  

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What can I do if I believe my child’s MPC hours were wrongly reduced?

If you believe your child’s hours were reduced by these rules, you can make a written request for an increase in hours to DDD.  If your request is denied, you can request a fair hearing.  

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My child is on a waiting list for services from the Division of Developmental Disabilities but receive no paid services. Will this decision help us?  

Unfortunately, there are some 16,000 people in Washington with developmental disabilities, who qualify for a home and community based service waiver, but receive no services.  While this case will ensure supports for 3000 or more children who do have a waiver, it won’t help all those who continue to wait for services.

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How does providing community support save the state money?

Providing limited community-based supports, like MPC, helps kids achieve independence and safeguards costly public services like institutional care or Medicaid/Medicare-provided nursing home care. Personal care support provided to help kids with significant disabilities acquire autonomy, employment and independent living to the greatest extent possible reduces the need for public assistance in adulthood.

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How will our state afford this? 

Providing early intervention and childhood supports to those with significant disabilities can preclude costly institutionalization and long term dependence and care.    Although this is a challenge for our state, providing early and appropriate supports to children with disabilities to prevent more complex conditions in their adulthood must be a priority for our public resources. 

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