Network Newsletter sent on October 3, 2019
News, policy updates, resources, events, and advocacy opportunities
Children with Medical Complexity
Webinar: The Next Steps to Improving Home Health Care for Children with Medical Complexity
Home health care is essential to children with special health care needs who may require help with medication administration, respiratory care, or activities of daily living to remain at home. A shortage of adequately trained pediatric home health care providers places these responsibilities on families. This interactive webinar will address potential workforce solutions from the perspectives of parent advocates, home health care providers, pediatricians, and state officials. Read the accompanying report, Home Health Care for Children with Medical Complexity: Workforce Gaps, Policy, And Future Directions and related article, Not Just Along For The Ride: Families Are The Engine That Drives Pediatric Home Health Care.
Wednesday, October 23
10:30 to 11:30 a.m. Pacific Time
Lucile Packard Foundation for Children’s Health
Details: Read about the speakers and register.
New: Eight Steps to Ensure that CSHCN Receive All Services Mandated under Medicaid
Although nearly half of CSHCN are insured through Medicaid, mandated services are not consistently understood or provided across the country. The resulting delays and denials can be detrimental to children’s health and create difficulties for families. A new issue brief from Manatt Health, developed in collaboration with families, offers a comprehensive checklist of eight best practice strategies that state Medicaid agencies can implement to improve access to services and health care for Medicaid-enrolled children. Read the issue brief, Keeping Medicaid’s Promise: Strengthening Access to Services for Children with Special Healthcare Needs (PDF) and its executive summary (PDF).
See related report: Communications Toolkit: Defending Against Block Grants and Other Cuts to Medicaid (PDF) – from Community Catalyst
Webinar to Introduce the Leadership in Family and Professional Partnerships Program
Thursday, October 10
12 to 1:15 p.m. Pacific Time
Family Voices Leadership in Family and Professional Partnerships (LFPP)
Details: LFPP works to increase engagement of families of CYSHCN at all levels of health care through the provision of assistance, training, and resources to Family-to-Family Health Information Centers, Title V programs, and other CYSHCN stakeholders. Speakers will discuss three focus areas. Read more and register.
Catalyst Center Updates Family Resources Directory
The Catalyst Center has posted a revised version of its state-by-state family resources directory, which provides links to a wide range of direct service organizations that assist children with special health care needs and their families. The directory is available in English and Español.
California Children’s Services
Webinar: Helping Families Obtain Durable Medical Equipment through the California Children’s Services Program
Wednesday, October 23
2 to 3 p.m. Pacific Time
National Health Law Program
Details: National Health Law Program attorneys Michelle Lilienfeld and Alicia Emanuel will provide guidance on the process for obtaining Durable Medical Equipment (DME) and medical supplies through California Children's Services, and the legal protections that apply. They also will provide advocacy tips, and introduce a new issue brief for advocates to help ensure that families have timely access to DME and supplies through the CCS program. One hour General CLE available. Read more and register.
Richard Figueroa Named Acting Director of Department of Health Care Services
Governor Newsom has appointed Richard Figueroa as acting director of the Department of Health Care Services. The Department oversees California Children’s Services and Medi-Cal, both of which are vital to children with special health care needs and their families. Read his background.
Reminder: CCS Advisory Group to Meet
Wednesday, October 9
10 a.m. – TBD Pacific Time
1700 K Street, Sacramento – First Floor Conference Room
(888) 989-6488; Passcode: 1945234 (listen only)
Details: See the website.
Transition to Adult Care
Chronic Illness and Disability Conference: Transition from Pediatric to Adult-Based Care
Texas Children’s Hospital
Details: Less than half of families nationwide indicate that their children with special health care needs have received the services necessary to make appropriate transitions to adult health care, work, and independence. One of the major hurdles is the lack of a professional workforce trained to help youth with transition. The conference is geared toward physicians, other health care providers, and youth and young adults who have a chronic illness and their parents or guardians. Fee. CME/CNE available. Read more and register.
Addressing Gaps in Health Care for Individuals with Intellectual Disabilities
Tuesday, October 15
10 to 11 a.m. Pacific Time
Centers for Disease Control and Prevention Public Health Grand Rounds
Details: People with intellectual disabilities (ID) report difficulty finding able and willing health care providers. Lack of training for health care professionals is one of the reasons. Speakers will discuss efforts to improve health outcomes for people with ID and how states can monitor and improve their health. Watch online.
Pediatric Palliative Care
The Role of Expressive Arts in Pediatric Palliative Care
Thursday, October 17
12 to 1 p.m. Pacific Time
Children's Hospice and Palliative Care Coalition, a division of Coalition for Compassionate Care of California, Pennsylvania's Pediatric Palliative Care Coalition, and Greater Illinois Pediatric Palliative Care Coalition
Details: Speakers will share ways that expressive therapies can increase the quality of life of children with serious illness and their families, and how these therapies can influence care provided by the rest of the interdisciplinary team. Fee. Complimentary for parents. CEU available. Read more and register.
Feds Reverse Policy on Deportation of Critically Ill
The federal government has announced that it will continue the "deferred action" program that allows immigrants who are critically ill to avoid deportation while they or their relatives undergo lifesaving medical treatment. An earlier proposal to modify the program faced strong opposition. Advocates say they will continue to monitor the situation. Read more.
- AB 1004 – The Governor has signed this bill, which requires that the Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) benefit include developmental screenings for infants 0 to 3 years old.
- The California Health and Human Services Agency has released a guide to the new federal “public charge” policy, which goes into effect October 15 unless it is blocked. See versions in English (PDF) and Español (PDF).
Legislative Internships Available for Youth with Disabilities
The American Association of People with Disabilities offers various summer internship opportunities for young people with disabilities, including a legislative placement in Washington, DC. The deadlines for applying are in early November. Read about the options and apply.
Call for Proposals
AMCHP Seeks Presentations for Annual Conference
The Association of Maternal & Child Health Programs has extended the deadline for its call for proposals for poster and session presentations at its 2020 Annual Conference, to be held March 21-24 in Crystal City, VA. The new submission deadline is Friday, October 11. Find more information.
In the News
- How Superheroes Are Helping One Imaging Center Drop Its Sedation Rates
Radiology Business, 9/30/19
- Efforts to Curb Restraint and Seclusion Still Largely Piecemeal
Disability Scoop, 9/6/19