To: President Donald Trump, The Nebraska State House, The Nebraska State Senate, and Governor Pete Ricketts
Stop Denying Services to Autistic Adults in Nebraska
Stop denying absolutely necessary services and medical treatments for our adults on the autism spectrum in Nebraska who are on Medicaid. Require Nebraska's Department of Health and Human Services to provide appropriate wraparound services which would include programs from both the Behavioral Health and Developmental Disability Divisions to adults on the autism spectrum.
Why is this important?
My daughter Allye was misdiagnosed as a child with mental health issues, when in reality she should have been identified as being on the autism spectrum.
By age 7, her disability issues were profound enough that not only did she start spending extended periods of time confined in mental hospitals, but started receiving SSI benefits. She is almost 28-years old, and she is still having major disability issues, and she is still receiving SSI as her only source of income.
As a child, Allye had access to day programs and services that helped her to learn appropriate skills to function day-to-day in her world. Unfortunately, now that she is an adult, she is no longer eligible for those same programs that so tremendously helped her. As a consequence, she cannot interpret properly all that is happening around her, and she is unable to move away from the home due to her vulnerability and lack of access to appropriate care. Also, as her parent and primary caregiver, my life is in constant distress with moments that could best be described as nightmarish, full of fear.
Back in 2006, I attempted to get Allye services through the Division of Developmental Disabilities (DD), through the Nebraska Department of Health and Human Services (DHHS). This entity deemed in 2007, through a court appeal, that Allye was not eligible for their services because of her IQ being too high. They rejected the provisions laid out by medical professionals that demonstrated she met the requirements for their program through other means as stipulated in “Nebraska Revised Statutes §§ 83-1205, 1209 and 12-1216, and Title 404 NAC, Chapter 3 of the Nebraska Administrative Code” (see http://dhhs.ne.gov/developmental_disabilities/Pages/DD-Eligibility-2.aspx).
Now, seven years later, we are back in Appeals court with further documentation from two different psychologists—one of who specializes in females with autism, another who was hired by DHHS to verify not only that she had autism, but the extent of her disability issues—and DD/DHHS has filed a motion to dismiss the case on the grounds that a previous decision had been made claiming no new evidence had been provided about her having a developmental disability AND that the decision they had made in 2007 had been a final decision . . . yet they looked at both psychological reports as new evidence; they also allowed for me to appeal their decision of “No” allowing for me to participate in an Informal Dispute Resolution last November 2013. And in the event that my daughter is to be able to continue with her appeal, DD/DHHS has requested of the judge that any evidence from 2007 admitted into court not be allowed this time around to help in proving that she qualifies for their services.
Why should Allye have to JUSTIFY her need for services—that is, programs only accessible if an individual is defined as developmentally-disabled—if three or more psychologists are already defining her as developmentally-disabled and able to provide documentation providing verification of their determination? Why should she, and others like her, be forced into the position of being holed up in family’s basements and extra bedrooms because they cannot access those services they need to be able to live as independently as possible as adults functioning in the cog of society?
Tell Nebraska’s state representatives, its governor, and the leadership of DHHS to stop bullying around our autistic adults; to give them a chance to live a quality level of life as all individuals are entitled in the United States of America; to provide our adult autistic community access to services on both the behavioral health and developmental-disability sides of service through Nebraska’s DHHS.
By age 7, her disability issues were profound enough that not only did she start spending extended periods of time confined in mental hospitals, but started receiving SSI benefits. She is almost 28-years old, and she is still having major disability issues, and she is still receiving SSI as her only source of income.
As a child, Allye had access to day programs and services that helped her to learn appropriate skills to function day-to-day in her world. Unfortunately, now that she is an adult, she is no longer eligible for those same programs that so tremendously helped her. As a consequence, she cannot interpret properly all that is happening around her, and she is unable to move away from the home due to her vulnerability and lack of access to appropriate care. Also, as her parent and primary caregiver, my life is in constant distress with moments that could best be described as nightmarish, full of fear.
Back in 2006, I attempted to get Allye services through the Division of Developmental Disabilities (DD), through the Nebraska Department of Health and Human Services (DHHS). This entity deemed in 2007, through a court appeal, that Allye was not eligible for their services because of her IQ being too high. They rejected the provisions laid out by medical professionals that demonstrated she met the requirements for their program through other means as stipulated in “Nebraska Revised Statutes §§ 83-1205, 1209 and 12-1216, and Title 404 NAC, Chapter 3 of the Nebraska Administrative Code” (see http://dhhs.ne.gov/developmental_disabilities/Pages/DD-Eligibility-2.aspx).
Now, seven years later, we are back in Appeals court with further documentation from two different psychologists—one of who specializes in females with autism, another who was hired by DHHS to verify not only that she had autism, but the extent of her disability issues—and DD/DHHS has filed a motion to dismiss the case on the grounds that a previous decision had been made claiming no new evidence had been provided about her having a developmental disability AND that the decision they had made in 2007 had been a final decision . . . yet they looked at both psychological reports as new evidence; they also allowed for me to appeal their decision of “No” allowing for me to participate in an Informal Dispute Resolution last November 2013. And in the event that my daughter is to be able to continue with her appeal, DD/DHHS has requested of the judge that any evidence from 2007 admitted into court not be allowed this time around to help in proving that she qualifies for their services.
Why should Allye have to JUSTIFY her need for services—that is, programs only accessible if an individual is defined as developmentally-disabled—if three or more psychologists are already defining her as developmentally-disabled and able to provide documentation providing verification of their determination? Why should she, and others like her, be forced into the position of being holed up in family’s basements and extra bedrooms because they cannot access those services they need to be able to live as independently as possible as adults functioning in the cog of society?
Tell Nebraska’s state representatives, its governor, and the leadership of DHHS to stop bullying around our autistic adults; to give them a chance to live a quality level of life as all individuals are entitled in the United States of America; to provide our adult autistic community access to services on both the behavioral health and developmental-disability sides of service through Nebraska’s DHHS.