SPECIAL KIDS SPECIAL CARE INC
6592 Club Villa Road, Parker, CO 80134 specialkids-specialcare.org

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Organizations Filed Purposes: Elevating families' ability to support the well-being of their premature babies and babies who need special care by providing essential support services, parent education and education to healthcare and early childhood providers.Vision: Informed, Connected, and Thriving Children and Families

Families of premature babies and babies who need special care are connected, confident, and comfortable in caring for their baby and have access to follow-up parent education and support from knowledgeable healthcare and early childhood professionals.

Family Support ProgramsIn 2020, the Family Support Program (FSP) was expanded to include the NICU Home Discharge Follow-up Phone Support Pilot Program (NICU Home). Seventy families, with 80 infants, were referred for support services, equipment, or infant supplies through the FSP. These families included four sets of twins and two sets of triplets. Eighty-eight percent of the infants were premature, and all were followed through the NICU Home Program. Due to the COVID crisis and family needs related to their infant's medical complexity, we received an increase in respite care requests due to social-emotional support needs and the need for special infant equipment. Fewer grants were from public health nurses for lactation support, but more were received from the NICU staff. We received most of our grant funds on June 1, 2020, leaving six months to provide families grants. We were still able to provide financial support grants for 26 families and NICU Home follow-up support for 64 families. Some families who were followed through the NICU Home Program also received Family Support Grants when such a need was identified. The amounts of the 26 Family Support Grants we provided were more substantial because of the infant's medical and family needs for respite care. Of the 26 Family Support Grants offered, nine were for respite care, 4 for special equipment, five lactation consultation, some with virtual visits and all with follow-up, 8 for infant cribs with infant supplies.Sixty-four families referred to the NICU Home Program were contacted by letter, phone call, or text after being discharged home from the NICU. The NICU Home Program plan had to be modified due to the COVID restrictions that eliminated anyone other than NICU staff and parents in the NICU. The goal had been to have a NICU Coordinator meet with families in the NICU, explain the program, and connect the family with a NICU Coordinator who would follow-up with the family soon after discharge. Instead, three experienced NICU family coordinators contracted to complete the follow-up contacts with the families. They completed orientation and training and assisted with adapting the NICU Home protocols for contacting families. The 64 families in the NICU Home Program were assigned to a coordinator for follow-up. Ninety-five percent of the families received a letter or phone call with a message if there was no answer. The initial phone call was followed-up by another phone call or text message. About 18% of those contacted responded that they were doing well or had no current needs. Five of the families identified the need for services through the Family Support Grant Program. Seven families could not be contacted due to a lack of a good phone number or incorrect address.The NICU Home Program was also modified based on the family response and feedback from the NICU Home Coordinators who contacted the families. Rather than contacting families at 3-4 weeks after discharge, it was determined that contact should occur soon after discharge (1-2 weeks) and 1-2 months and up to 6 months. Families may need support immediately after discharge from the NICU. Still, once family and other supports are gone, they may begin to feel isolated and depressed and not know who to contact. We also explored other options of connecting with families. Because of the differences in the Family Support Grant referral source from the public health nurses (13%) to the NICU discharge staff (83%), we saw a difference in the families' demographics. The premature infants' gestation was lower than the premature infants referred in the past, with 29 weeks compared with 32 weeks. This year fewer families were on Medicaid (33%), and more families had private insurance (43%) or private/Medicaid insurance (11%) or had no or unknown insurance (13%). More referrals were for Caucasian/Non-Hispanic families (64%), and fewer referrals were for Black families (14%), Asian families (6%), Latina families (2%). Race or ethnicity was not documented for 14% of the families.

Professional Education Programs:Due to the COVID restrictions, we began to offer our Professional Education Programs through ZOOM. Due to COVID, there was a decrease in interest in classes since most previous participants work as public health nurses or early interventionists. Due to the COVID distancing and restrictions from visiting in someone else's home, both public health and early intervention staff are doing virtual home visits. They are also seeing fewer families now. Through the online Beginning Rhythms and Keys to Caregiving that focuses on the foundations of early childhood development birth to three and strategies that support positive parent-child relationship, we had 20 participants. The course evaluations reflected high satisfaction with the course content and frustration with the inability to have more discussion using ZOOM conferencing. Also, some technical problems prevented the plan to record the sessions for those who could not attend.We also offered the Parent-Child Relationship program NCAST Feeding Scale to six participants online. This education program allows participants to become certified in using the NCAST Feeding Assessment Scale for assessment and intervention strategies of parent-child relationships, birth to 12 months of age (adjusted)during a feeding. All six participants completed their certification, although multiple sessions with individual participants were needed requiring extensive time. Participants were delighted with this program and stated that they look forward to the next program NCAST Teaching Assessment Scale, for infants and children birth to three years of age.

NICU Consortium Partnership:The NICU Consortium Partnership has been very involved with the transition of their programs to Newborn Hope. The NICU Consortium Partnership held two NICU Consortium Partnership Meetings to bring together healthcare providers, NICU staff, and organizations who care for premature infants' families after discharge to develop strategies that will support families who are transitioning home from the NICU. These meetings have resulted in three committees. NICU Parent to Parent Peer Mentors NICU Staff and Community Professionals Networking NICU Parent Transition Home- Supporting Continuity of Care NICU to home They also provided the following education program Webinars.

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