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Authors Posts by Tim Sohosky

Tim Sohosky

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Thank you for sharing these important workshops and support groups with your networks! Register for upcoming events at PA Family Network’s website.

Good Life Group, Support Groups

LifeCourse Workshops

Waiver Workshops

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The Office of Developmental Programs (ODP) is sharing this important announcement from the PA Department of Health.

As of November 11, 2025, 15 infants with suspected or confirmed infant botulism were reported from 12 states: Arizona, California (2), Illinois (2), Kentucky, Minnesota, New Jersey, North Carolina, Oregon, Pennsylvania, Rhode Island, Texas (2), and Washington. Laboratory confirmation for some cases is ongoing. Illnesses started on dates ranging from mid-August to November 2025. All 15 infants were hospitalized and treated with BabyBIG®. No deaths were reported. Infants ranged in age from 16 to 157 days. State and local public health officials are interviewing caregivers about the foods infants were fed in the month before they got sick. All 15 (100%) reported feeding ByHeart Whole Nutrition infant formula. This investigation is ongoing, and additional cases may be identified.

All ByHeart Whole Nutrition Infant Formula products were recalled. This includes all unexpired lots of formula cans and single-serve “anywhere” sticks. The link to the recall can be found here.

According to the FDA, ByHeart Whole Nutrition Infant Formula makes up less than 1 percent of all infant formula sales in the United States. Given this small market share, recall of these products is unlikely to create shortage concerns of infant formula for parents and caregivers.

Summary:

  • On November 11, 2025, ByHeart, Inc. recalled all lots of ByHeart Whole Nutrition Infant Formula in response to the U.S. Food and Drug Administration’s (FDA’s) ongoing investigation into a recent outbreak of infant botulism.
  • According to the company’s website, ByHeart Whole Nutrition Infant Formula was sold through its website ByHeart.com and through retail stores nationwide, including Amazon, Kroger, Walmart, Whole Foods, Target, SamsClub, and others.
  • Infant botulism is a rare but potentially fatal paralytic illness that impacts babies less than one year old. Symptoms can include constipation, poor feeding, drooping eyelids, weak cry, and progressive muscle weakness.
  • Health care providers (HCP) should call the California Infant Botulism Treatment and Prevention Program (IBTPP) immediately at 510-231-7600 for consultation of suspected case. Consultation is available 24/7. Treatment with botulism immune globulin, BabyBIG®, obtained from California Department of Health, is recommended for all suspected cases of infant botulism.
  • Infant botulism is a reportable disease in PA; all suspected cases must be reported to the Pennsylvania Department of Health (DOH) at 1-877-PA-HEALTH or their local health department.

For More Information

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Life Sharing is a service that has one of the highest rates of satisfaction aligning with an everyday life (Independent Monitoring for Quality (IM4Q)). The Office of Developmental Programs (ODP) wants this service to continue to grow and is providing information to educate everyone about the Life Sharing service. The first step was to create promotional materials to assist with their goal. These documents were created with the assistance of Providers of Life Sharing, Administrative Entities, ODP, and feedback from Supports Coordinators.

In the near future, webinars will also be provided on Life Sharing, and ODP will communicate with stakeholders when these dates are set.

What are These Documents?

There are two documents available:

  1. The Life Sharing Brochure is intended for individuals and families with the hope that Residential Providers that offer the Life Sharing service and Supports Coordination Organizations will print these out and disseminate at their headquarters as well as pass them out as appropriate. This document easily describes what Life Sharing is at a high level.
  2. A one-page document, “Information to Help Supports Coordinators Talk to Individuals and Families About Life Sharing,” is intended for Supports Coordinators to use when having conversations with individuals and families. ODP hopes Supports Coordinators will utilize this form at Individual Support Plan (ISP) meetings and on a more routine basis to help individuals and families understand what the Life Sharing service is and to help them understand there are multiple options for residential services.

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Independent Monitoring for Quality (IM4Q) has released its October update, highlighting current activities and opportunities for involvement.

The update includes information on the 2025–2026 cycle, including sample distribution, upcoming survey materials, training reminders, and data system updates. It also provides updates on the external evaluation, Enterprise Case Management reports, and resources available on MyODP. Local programs are encouraged to review and provide feedback on reports, share lessons learned from the QA&I cycle, and ensure required trainings are completed.

In addition, the IM4Q Statewide Steering Committee is seeking new self-advocate and family member participants. The committee brings together individuals with disabilities, families, and system partners to share input and help guide statewide IM4Q efforts. Members meet quarterly (mostly online), are compensated for participation, and play a key role in shaping IM4Q surveys, reviewing reports, and ensuring that stakeholder voices are represented.

  • The full IM4Q October Information Update can be found here.
  • The IM4Q Steering Committee Membership flyer with details on how to join can be found here.

For questions or additional information, please contact Lee Stephens, Human Services Analyst, Office of Developmental Programs, via email or at 717-783-5773.

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Legislation. Wooden gavel and books in background. Law and justice concept

HB1939, the ID/A Market Index for DSP Services, was originally scheduled for a vote in the House Human Services Committee on Wednesday, October 29, 2025. However, the bill was removed from consideration prior to the vote due to identified deficiencies in the bill’s language. Revisions are currently underway to address these issues, and it is anticipated that the committee will reconsider the bill for a vote sometime in November 2025.

RCPA continues to closely monitor the bill’s progress and will provide updates to members as new information becomes available.

Please direct any questions regarding this legislation to Tim Sohosky.

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The Office of Developmental Programs (ODP) is hosting a series of discussion boards and focus groups focused on 1-person licensed residential homes. The discussion boards will be online forums open for 48 hours, allowing participants to log in and out at their convenience throughout the two-day period. Total participation time is expected to be about 2 – 3 hours, and the forums will be semi-anonymous (participants will be identified only by first name). Focus groups will follow the discussion boards and will be scheduled at a later date.

ODP continues to seek participants for the DSP and family stakeholder group. Interested individuals should submit their name, agency (if applicable), and contact information to ODP’s Executive Assistant Jordan Kembel electronically.

Stakeholder Groups & Dates

DSP Group

Discussion Board Dates: December 4 – 5, 2025
ODP is seeking DSPs who:

  • Support individuals in 1-person homes and can share their experiences, successes, and challenges;
  • Have helped individuals transition from 1-person to 2+ person homes; and
  • Support individuals with significant behavioral support needs in 2+ person homes.

Family Group

Discussion Board Dates: December 11 – 12, 2025
ODP is seeking family members who have a loved one living in a 1-person licensed home and are willing to share their perspectives and experiences.

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The Pennsylvania House Human Services Committee is scheduled to vote on HB1939 on Tuesday, October 29, 2025.

HB1939, along with its companion bill in the Senate (SB617), would establish annual rate increases for Intellectual and Developmental Disabilities (IDD) services based on the Consumer Price Index for All Urban Consumers (CPI-U). This bi-partisan legislation, supported in both chambers, would help ensure that provider reimbursement rates keep pace with inflation, supporting workforce stability and maintaining high-quality services across the system.

RCPA supports HB1939 and encourages members to contact the House Human Services Committee to express support and request a “Yes” vote on the bill.

Please direct any questions to Tim Sohosky.

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