SPRINGFIELD, Mo. - The question of guardianship may seem like a simple decision to be made, but being placed under guardianship can have devastating effects for a person with developmental disabilities. It's often seen as the only option when a person needs assistance or support in making decisions, but disability advocates say it can lead to a loss of freedoms.

Preliminary results from a project on guardianship in Missouri show that more work needs to be done to educate the public about the rights of people with developmental disabilities.

Five years ago, Cristal Chapman says someone filed a petition to place her under full guardianship when she began having some personal difficulties as a result of her disabilities. She says she was forced to live hours away from her husband in a locked-down facility and had to give up some of her civil and human rights, even though she had done nothing wrong.

"They took away my freedom of religion. There was one point where they wouldn't let me talk to, see or write my husband. It was pretty bad."

With assistance from Missouri Protection and Advocacy Services, through the Guardianship project, Chapman successfully petitioned the court and restored her rights. Chapman is again living independently with her husband, and making her own decisions.

Dolores Sparks, program specialist with the Missouri Planning Council for Developmental Disabilities, says many people with developmental disabilities and their families aren't aware of all the programs available to provide support for independent living in their own community. So a decision is made about guardianship, she says, without having all the information.

"That's a very big missing link here, that people just assume that if their loved one needs a guardian then you just go to court and you just get full guardianship."

Sparks says the three-year study project on guardianship wraps up later this year.

Supporters of guardianship say it's an option when a family member can't take care of a loved one with a disability.


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As the country observes Autism Acceptance Month, Nebraska families raising a child with Autism Spectrum Disorder are among those learning they will be receiving financial assistance.

The Family Support Waiver is based on passage of a 2022 bill and will provide up to $10,000 annually for 850 Nebraska families with a child with a developmental or intellectual disability, and the child will also receive Medicaid coverage.

Leslie Bishop Hartung, president and CEO of the Autism Center of Nebraska, said many Nebraska families raising children with a variety of developmental disabilities struggle to afford their child's care needs.

"It's not a lot of money but it might be just enough for families to bridge those gaps when they really need support, especially over the summer break when there's no school for children," Bishop Hartung pointed out. "And also, specific services that might be a real financial burden."

Families can use the waiver funds for services such as respite care, family caregiver training, home modifications and assistive technologies. Depending on the child's limitations and level of support needed, families can face considerable costs meeting the needs of a child with a developmental or intellectual disability.

Jennifer Clark, deputy director of the Developmental Disability Division for the Nebraska Department of Health and Human Services, said they are notifying around 150 families per month between now and August they will be receiving the Family Support Waiver. The notices are prioritized according to the family's need. Clark says this was determined by their responses to a survey DHHS sent to families with a child on the developmental disabilities waiting list.

Receiving first priority are families in crisis.

"Where the child tends to self-harm or harm others, so whether they're harming their siblings or their family members," Clark outlined. "The second priority is children with disabilities who are at risk for placement in juvenile detention centers or other out-of-home placements."

Clark added families in which the grandparent is the primary caregiver are given third priority, followed by families with more than one child with a disability living at home. Remaining families are prioritized based on the date they applied to the developmental disabilities waiting list.

Jordan Squiers, board president of The Arc of Buffalo County, said they are hopeful the waiver will help fill gaps in services, especially for older youths who do not become eligible for more inclusive services until they turn 21.

"They might be able to get additional help in their home; they might be able to hire somebody to take somebody out into the community more often," Squiers explained. "Kids that age do get the benefit of the schools but obviously we know there's lots of hours in the day outside of that; weekends, summers."

The Family Support Waiver is one of three Home and Community-Based Services Medicaid Waivers available in Nebraska.

April is Autism Acceptance Month and as rates grow, support organizations in South Dakota hope more children on the spectrum get the tools they need to succeed in school.

Researchers with the Annie E Casey Foundation say nearly 9% of South Dakota students receive special education services due to an autism diagnosis, which is four percentage points higher than a decade ago.

Carla Miller, executive director of South Dakota Parent Connection, which works with families of children with disabilities, encouraged parents of children with autism to be proactive with school officials and follow up as needed. For school districts, she stressed clear communication is vital.

"We need to be careful we're not using a lot of jargon that's our related to our field, and really make sure that we ask parents, are they understanding the information we're giving?" Miller urged.

Miller also advised classroom leaders should allow students with autism to participate in as many general class activities as possible while acknowledging their needs. With staffing shortages still a concern, she called on districts to provide more training, especially for general educators.

Miller emphasized special educators cannot foster a welcoming environment on their own and in an era of more awareness, Miller hopes school districts look at students on the spectrum as individuals who bring unique qualities to their class.

"How is autism showing up in the life of that child, and how is it impacting that child?" Miller asked. "Trying to stay away from stereotypical descriptions of autism that can put kids in a box. "

Autism presents a broad range of conditions highlighted by challenges with social skills, repetitive behaviors, and communication. Advocates stressed symptoms can vary widely and the disorder looks different for everyone on the spectrum.


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As siblings in foster care, the fear of being separated is daunting. But thanks to a loving family in Jacksonville, Fla., for two brothers in Ohio, that bond remains unbroken.

Despite Dalton's cerebral palsy and numerous medical challenges, brother Dawson became his devoted caregiver. The two were adopted by Robbin and Steven Brydges through the nonprofit "Wendy's Wonderful Kids," and they've become a beacon for disability awareness.

Now, at 15, Dawson said he's grateful for his parents' support in keeping them together through it all, as he continues to care for his brother.

"He is the most amazing brother a man could ask for," he said. "He has an incredible smile that will just brighten your day instantly. And I'm just blessed to have him in my life, that's all I can say. I'm just blessed."

March is National Disability Awareness Month, and Dawson encouraged anyone considering the adoption process to consider all kids - especially those with challenges who are often overlooked, along with older kids - when it comes to finding their forever home.

Rita Soronen, president and CEO of the Dave Thomas Foundation for Adoption, said children with disabilities or special needs - regardless of race, age, or background - often face prolonged stays in foster care or institutional settings. She underscored the need to establish a support network for families considering adoption, and said the Wendy's Wonderful Kids Program was created to assist families in navigating this journey, no matter a child's unique needs.

"Making those connections of access to networks - access to medical or psychological resources that they will need before that adoption is finalized - is critical," she said, "so that families feel that they will be supported, that they will have access, and that they can successfully raise a child in their home."

According to the Dave Thomas Foundation, its Wendy's Wonderful Kids Program is responsible for more than 14,000 successful adoptions across the United States and Canada.