South Sound Parent to Parent (SSP2P) has a long history of supporting families who are raising children or caring for family members with disabilities. As a valuable resource for the local community, SSP2P has recently heard from many parents who are afraid to have their child’s autism diagnosis listed in any records systems.
These worries are sparked by U.S. Secretary of Health and Human Services Robert F. Kennedy, Jr.’s reported remarks about autism. “We are concerned,” says SSP2P Executive Director Kim Smith. “As a support system for families, it becomes extra challenging to lift up families who are being told that ‘autism destroys families’ and is an ‘individual tragedy as well.’”
Added to that concern is a purported federal proposal to extract information from records to create a national “autism registry” to “track” autism as a “chronic disease.” Parents and caregivers troubled by the controversial comments are also alarmed that a registry may breach the confidentiality and security of autism diagnosis and other protected records.
But there’s hope. Local parents and caregivers do not need to navigate these big national issues alone. South Sound Parent to Parent is deeply committed to standing by these families. The organization is sending a message that diagnosis records need to be carefully managed and protected. “An autism diagnosis often equates to services,” explains Executive Director Kim Smith. “Some therapies are not available without the diagnosis. It is important to reduce fear that comes with the diagnosis, so children don’t go without.”
“In light of recent statements made by Robert F. Kennedy Jr. and others in the public eye, it is more important than ever that we speak out clearly and compassionately in support of our autistic loved ones and every person living with a disability,” adds Smith.
South Sound Parent to Parent Says Check With Providers About Autism and Other Records’ Confidentiality Protections
Privacy laws and rules contain restrictions on accessing medical and educational records. For example, the federal Health Insurance Portability and Accountability Act (HIPAA) restricts access to and provides security protections for health care records, and the federal Family Educational Rights and Privacy Act (FERPA) restricts disclosure of personally identifiable information in education records. In addition, state laws and rules protect certain health care information and education records.
Smith encourages families to check with their physicians, therapists, insurance companies and other providers to ask how they protect their family member’s information. She says that typically state records are not accessed by anyone at a federal level.
South Sound Parent to Parent is Committed to Helping Families Respond to Misinformation about Autism and Disabilities
Parents share a deep concern with professionals and SSP2P regarding information about autism that was complicated by the HHS Secretary’s recent comments. Unfortunately, the HHS Secretary’s comments and federal registry discussion may lead to dissemination of inaccurate information about autism and disabilities.
“Raising children with disabilities can be challenging,” Smith says. “Navigating so many systems turns into a full time job for some. To add the worry over their children being targeted in some way by a government official with a national platform is terrifying.”
South Sound Parent to Parent is passionate about helping community members and ensuring accurate information is available. “SSP2P is and will remain a support system for all families raising children or caring for someone with a disability,” Smith says. “We love and honor the courageous, hardworking families we support, and we will continue to stand with them.”
South Sound Parent to Parent Offers Accurate Information and Resources Supporting Families in Thurston, Mason, Grays Harbor and Kitsap Counties
Smith strongly confirms that people with autism or other disabilities are not a “burden” or “broken.” Rather, she says they are human beings with their own strengths, challenges, dreams, and contributions. “We cannot allow hurtful rhetoric to define the narrative around disability,” she says. “Words carry power, and when they are used to stigmatize, diminish, or dehumanize others, they create real harm. Implying that disability is something tragic, undesirable, or even apocalyptic reflects a fundamental misunderstanding of the rich, complex, and beautiful lives of so many individuals and families.”
Smith urges people to research the recent rhetoric. “I would strongly encourage community members to fact check statements made by those who are not educated in autism or other disabilities,” she says. She notes that PBS has published some good information online.
South Sound Parent to Parent helps the community find ways to share common goals that support families and caregivers. SSP2P’s local resources include an autism support webpage, knowledgeable staff, parent groups, newsletters, and much more. South Sound Parent to Parent serves Thurston, Mason, Grays Harbor and Kitsap Counties. Contact information for the local offices is on the organization’s website.
Sponsored
