Children and Youth with Special Health Care Needs (CYSHCN) Systems Development Group

About Us

The Texas Department of State Health Services (DSHS) Maternal and Child Health (MCH) CYSHCN Systems Development Group works to strengthen community-based services and improve family-serving systems. We are a public health program under federal legislation called Title V. In Texas, Title V work supports many initiatives and funds the CSHCN Services Program administered by the Texas Health and Human Services Commission (HHSC).

How We Help CYSHCN and Families

We partner on many initiatives to improve the lives of CYSHCN and their families at the local, state, and national level. We support regional case managers throughout Texas who connect families to needed resources and services. We also contract with community-based organizations that help families in some areas of the state through a program called Family Supports and Community Resources.

How We Engage Families

Advancing meaningful family engagement is central to our work. The CYSHCN Systems Development Group is committed to actively involving families in program and policy development. We know our families bring expertise that only comes from lived experiences. We strive to empower families as equal partners actively engaged in planning, development, and evaluation of programs and policies.

The Children with Special Health Care Needs Services Program administered by the Texas Health and Human Services Commission helps children under the age of 21 with special health care needs and people with cystic fibrosis of any age improve their health, well-being, and quality of life.

Focused on family-centered and community-based strategies, the program wants families to get services that honor and respect their cultural beliefs, traditions, and values.

All services must be medically necessary. These include:

• Medical, dental, vision, and mental health care:
• Prescription drugs;
• Special medical equipment, supplies, and therapies;
• Case management;
• Family support services;
• Travel to health care visits; and
• Insurance premiums.

To learn more about the program, including eligibility requirements and how to apply, please visit the CSHCN Services Program website.

We recognize systems serving CYSHCN and their families are complex and hard to navigate. A case manager can assist families identify needs and access resources and supports. Our program helps families of CYSHCN link to case management services in two ways:            

1. Texas Department of State Health Services Case Management Program – Case management services are available in every county in Texas through Public Health Regions (PHRs). Visit the PHR website to find your local office and request more information about case management services.
2. Community-based Case Management Contractors – Our agency contracts with organizations who provide case management in some areas of the state. Check out this list of our case management contractors to see if there is one in your area.

We contract with community-based organizations providing a variety of services to CYSHCN and their families in some, but not all, areas of the state. Services vary by area and may include respite, family education and training, sibling support, social or recreational activities, and more. See this list of our Family Supports and Community Resources contractors to find out if there is one in your area.

In Texas, disasters can strike quickly and without warning. It is important to know what types of emergencies are likely to affect your area. As a family with a child and youth with special health care needs, medical complexity, or disabilities, planning for an emergency is critical. You and your loved ones could be anywhere when it happens – at work, home, school, or in the car.

Every Family Needs an Emergency Plan

Planning with your family before a disaster is the best way to keep everyone safe. Think about what kinds of daily supplies, medicines, and help your family needs. Think about how you would make it on your own for at least three days. Remember to include all family members and pets when you make your plan. 

What does your family and child with a specific health care need or disability need in an emergency?

Every situation is different, and each child has unique needs. To begin, here are some questions to think about as you plan for an emergency:

Depending on the disaster and personal needs, will you:

• Stay put and shelter-in-place?
• Go to a public shelter?
• Go to a relative’s or friend’s home?
• Do something else?

It’s important to plan for all possibilities. Consider:

• How will your family members keep in touch if separated and phone service is unavailable?
• Have you discussed emergency planning with your child’s health care providers?
• If you will need help to evacuate, did you pre-register with 2-1-1?
• Are there supplies that need refrigeration?
• Is there essential equipment that requires electricity? Have you notified your utility company?

What supplies for service animals or pets  do you need? By law, public shelters must allow service animals.

What do you need in your emergency kit?

Besides survival basics such as food, water, first aid, and tools, keep handy:

• An Emergency Information Form with a list of your child’s current doctors, pharmacy, and phone numbers.
• A list and a two-week supply of all current prescription and non-prescription medicines, if possible.
• Two weeks of medical supplies, such as:
  • Oxygen;
  • Syringes;
  • Catheters; and
  • Formula and other nutritional products.
• Key documents stored on a CD, flash drive, or a phone app like:
  • Personal identification;
  • Health insurance cards;
  • Prescriptions; and
  • Medical records.

Keep paper copies in a waterproof bag.

• Extra batteries or chargers for hearing aids, wheelchairs, cell phones, and other essentials.
• Personal care and hygiene items.
• Items to calm and entertain your child. 

The Center for Disease Control and Prevention (CDC) offers many emergency planning resources for children with special health care needs and disabilities including:

• Keeping Children with Disabilities Safe in Emergencies;
• Children and Youth with Special Health Care Needs in Emergencies; and
• Preparing Children with Special Health Care Needs for an Emergency.

Here are more ways to plan for an emergency:

• Register for the State of Texas Emergency Assistance Registry (STEAR) program. This free, public registry provides local emergency planners and responders with information during emergencies.
• Visit your local fire and police departments. Tell them about your child. Invite them to your home to meet your child and give you emergency tips.
• Make a list of family, friends, and others in your support network.
• Include a relative or friend in another area who would not be in the same emergency and would be able to help, if needed.
• Pick one place in your neighborhood and one place outside of your neighborhood for your family to meet in case you are separated during a disaster.
• Check medications in your emergency kit to be sure they have not expired.

Additional Emergency Preparedness Resources:

• Texas Ready
• Ready.gov - Prepare, Plan and Stay Informed.

Parent Support

Texas Parent to Parent, the state’s Family to Family Health Information Center and one of our community-based partners, provides parent to parent networking, parent support groups, educational workshops, and more in all areas of the state.

Respite

Respite means having someone else care for your child while you take a short break. Respite can take place either in your home, at a family member’s or friend’s home, or a location in your community. 

Various people can provide respite. Sometimes a family member or friend can step in when you need a break. Other times, you may need to hire someone. What’s most important is having a plan that is right for your family so you can access respite to refresh and renew. 

Some government programs may provide free or low-cost respite care. To find out if your child qualifies for federal or state respite services, call 1-855-937-2372 to talk to a trained professional about your options. 

Visit Take Time Texas to learn more about respite and search to see if you have respite providers in your community. 

Learn more about respite and choosing a respite provider from the ARCH National Respite Network and Resource Center.  

Camps for Children, Youth, and Adults with Disabilities and Specific Health Care Needs

There are many options for your child of any age to experience camp both in the summer and at other times throughout the year. The Navigate Life Texas website page Sending Your Child to Camp includes great information about camp and links to find what’s available. In Texas, some programs offer family camps. You can also use these links to search for camps:

• Camp for All;
• Texas Special Needs Camps and Programs; and
• Very Special Camps.

Inclusive and Accessible Playgrounds

The accessible playground directory and learning lab helps families find a place where all children will be able to play. View the accessible Texas playground directory. 

Adaptive and Inclusive Recreational Programs

Use the links below to search of inclusive programs near you:

• Best Buddies in Texas;
• How I Roll Sports;
• Special Olympics Texas;
• National Center on Health, Physical Activity, and Disability

We value relationships with professional colleagues and welcome opportunities to partner on strategic initiatives to improve the quality of life and well-being of CYSHCN and their families.

We work to bring partners together for collaboration and learning for CYSHCN and their families. Our partners provide subject matter expertise in key areas while sharing evidence-informed resources, data, and practices to build capacity and improve CYSHCN-related systems.

Free Continuing Education (CE) Courses

Texas Health Steps’ online program offers free CE courses for primary care providers and other health professionals. These courses offer updated clinical, regulatory, and best practice guidelines for: 

• Preventative health:  
• Oral health; 
• Mental health; and  
• Case management topics, including medical home. 

Here are some Texas Health Steps courses specific to CYSHCN:

• Transition services for Children and Youth with Special Health Care Needs Course;  
• Promoting Adolescent Health;
• Autism Spectrum Disorder: Screening, Diagnosis and Management; and
• Genetic Screening, Testing, Treatment and Referral.

Transition to Adulthood

Got Transition, the national technical assistance center on health care transition, works to improve transition from pediatric to adult- health care using evidence-driven strategies. Got Transition’s resources for health care professionals center on the Six Core Elements of Health Care Transition which define the basic components of health care transition support for providers. These include:

• Establishing a transition policy;
• Tracking progress;
• Administering transition readiness assessments;
• Planning for adult care;
• Transferring care; and
• Integrating into an adult practice. 

The Texas Transition Toolkit is an online tool developed by Texas A&M University School of Public Health. It guides patients with special health care needs from pediatric health care to adult health care. The website includes a searchable database of:

• Peer-reviewed articles on health care transition for children and youth with special health care needs (CYSHCN);
• Tools used by different clinics and programs to facilitate health care transition for CYSHCN; and
• Tools for developing your own health care transition program for CYSHCN.

Emergency Preparedness

The U.S. Department of Health and Human Services Child and Adolescent Health Emergency Planning Toolkit: Guidance for Addressing the Needs of CYSHCN contains resources and promising practices to help providers coordinate and integrate systems of care for CYSHCN families.

The federal Maternal and Child Health Bureau requires our program to assess the needs of families of CYSHCN and young adults with disabilities every five years. Texas surveys families during the interim years to monitor family experience more closely. The findings help us identify where to focus our efforts and align activities based on what families of CYSHCN and young adults say really matters. Data from the National Survey of Children’s Health (NSCH) also informs how we determine priorities.

Title V national and state performance measures drive our work. We select specific measures based on findings from family and young adult surveys through our needs assessment process. Each year, we report on the state’s progress to our federal partners.   

Based on survey findings, Texas selected the following national performance measures (NPMs) and state performance measures (SPMs) for CYSHCN for state fiscal years 2020-2025:

• Percent of children with and without special health care needs having a medical home;
• Percent of adolescents with and without special health care needs who received the services necessary to make transitions to adult health care; and
• Percent of children and youth with special health care needs and their families who received supports and services necessary to be integrated into their communities.