Additional Supports for Families

Families Need Support

Raising a child with mental and behavioral health challenges can be stressful. Parents may feel:

• Overwhelmed by the amount of information about services and treatment options
• Confused about what services are best for their child
• Frustrated over conflicting opinions and changing diagnoses
• Disempowered by child-serving systems (e.g., mental health, education, juvenile justice, child welfare, substance use treatment) that are difficult to navigate
• Blamed by professionals, friends, and family members for their child’s disability or behavior
• Burned out from dealing with crisis after crisis
• Isolated when caregiving responsibilities restrict their ability to socialize or participate in community activities

Tips for Dealing with Stress

Every family situation is different. What works for one family may not necessarily work for another family. However, here are few tips to share directly with families that can make the journey less stressful.

• Ask others to help. Doing it alone is unrealistic. Other parents and caregivers can be a tremendous source of support. Enlist family and friends to help with caregiving tasks. Support can take many forms such as providing transportation or babysitting, sharing information about services in the community, or someone to talk to who understands what it’s like to be in your shoes.
• Learn as much as you can about your child’s condition. There is a wealth of information about mental health diagnoses, evidence-based treatments, and psychotropic medications that is specifically written for parents and caregivers that is available online, in books, and from state agencies and local service providers. The amount of information can be daunting, but a good place to start is to look up online resources though organizations like the Substance Abuse and Mental Health Services Administration (SAMHSA) or your state department of mental health. Local libraries often have computers available for public use.
• Develop strong relationships with teachers. You may feel concerned about labeling your child or discussing sensitive topics with school staff, but the more information that you share with your child’s teachers the better. Your child may have issues with executive functioning that make it difficult to stay organized or process information efficiently or may be hypersensitive to noise bright lights, or routine transitions that results in sensory overload. Teachers may be able to implement simple strategies such as letting your child sit in the front of the room or giving him the option to take a “time out” to visit the counselor when she’s having a rough day that can make a big difference.
• Take care of yourself. Taking care of yourself is key to being able to take care of your child. Try to keep some time for yourself and do something you enjoy doing like watching your favorite show on television. It can be isolating caring for a child with mental health needs. Stay connected with friends by talking on the phone or meeting for lunch. Eat balanced meals, exercise, and get your sleep when you can. Take care of your own health and mental health. It is normal to experience negative emotions such as anger, fear, shame, guilt, and self-blame. You may want to join a support group or seek counseling for yourself, especially if you are feeling overwhelmed by stress or strong negative emotions.
• Maintaining home life. Children with behavioral health needs can sometimes create situations at home that affect how everyone in the family function. Establishing a routine and a calm, structured environment at home can help the entire family. Sounds easy, but it is not! You may spend a lot of time waiting in emergency rooms, talking with providers, and dealing with your child’s crises. Other family members may feel pushed aside or deprived of normal family time that others enjoy. Try to set aside special one-to-one time with your partner and other children. Get them involved in support groups, individual or family counseling, and peer-led activities. Peer-to-peer support groups give siblings a chance to talk with other kids their age who had similar experiences.
• Become an advocate for family-driven systems of care. One of the most powerful things that you can do is to champion family-driven systems of care in your community. Child serving systems do not often communicate across systems. The child-serving agencies frequently look for parents and youth to give feedback and participate on advisory boards and councils where their feedback can help inform family-driven policies and practices. Your advocacy helps improve services for your child and other children in your community.

Where can I find out about resources and supports in my community?

• Service Locators and Directories . The Substance Abuse and Mental Health Services Administration (SAMHSA) website links to locators that assist families in finding treatment services and supports near where they live, including the national Suicide Prevention Lifeline and the 24/7 Treatment Referral Line, diagnosis specific support groups and the Behavioral Health Services Locator. Health insurance providers usually have an online listing of local providers. The state Medicaid agency can provide information about professionals that accept Medicaid in the area.
• Federal, State, and Municipal Agencies. Parents can access information about services and other resources from state agency websites and clearinghouses. Agencies who administer children’s mental health, education, substance use, child welfare, and juvenile justice services in your state often recognize the challenges that parents face navigating multiple systems and publish guides specifically designed for families. Local townships often provide links to services in their communities.
• Support and Advocacy Organizations. Family-run organizations and other support and advocacy groups often offer a range of workshops and trainings for parents to increase their knowledge of behavioral health issues, locate services, and improve their advocacy skills such as effective communication and collaboration. The Family-Run Executive Director Leadership Association (FREDLA) maintains a list of state and local family-run organizations and their contact information; FREDLA can be reached at info@fredla.org or www.fredla.org . There are online resources, as well. For example, the Child Mind Institute has published a Parent’s Guide to Getting Good Care (PDF) which takes you through the steps to find the best professional to treat your child and how you can ensure that you are getting quality care.
• Community-based Service Organizations. Pediatricians, community-based health centers, and cultural organizations are a good source of information about overall health. They often provide services and resources to address a variety of family needs, including nutritional health and food, behavioral supports, and culturally specific assistance.
• Educational Organizations, Institutes and Professional Associations. Associations like the National Post-Traumatic Stress Network, the Child Mind Institute or the American Academy of Child and Adolescent Psychiatry publish guides for parents that summarize the current literature on best practices and evidence-based treatments, as well as resources to help parents find service providers.
• Other Parents. When you are looking for information and services in children’s mental health, other parents are a great resource. A good way to start to find services and supports is to ask people you know who may have used these services or know of others who have used them.

Parent Peer Support

What is a parent peer support provider?

A parent peer support provider (PPSP) can be the support and coach that a parent needs when struggling to identify and access services for their child(ren).

• A PPSP is a person who is currently or has raised a child or youth with a behavioral health challenge, is familiar with the child serving systems in your community, and helps families learn how to advocate for services for their child and other children in their community.
• PPSPs provide an important sense of hope and empowerment; they have lived experience and understand the struggles that parents and other caregivers go through. Families report feeling more confident in their ability to care for the child and better able to access community supports and work collaboratively with service providers when they have a PPSP.
• Although not all states require a certification for PPSPs, there is a national certification offered by the National Federation of Families for Children’s Mental Health and many states have state-specific certification processes. Funding for parent peer support services varies from state to state, including Medicaid, local, state, federal and grant monies.

PPSPs can provide a wide range of assistance and support depending on the setting, including:

• Information and referral
• Support groups for youth, caregivers, and families
• Parent training and education to increase knowledge and skills
• Systems navigation to help families access resources and services
• Specialized supports for families experiencing challenges with systems such as child welfare or juvenile justice or education
• Social activities and events to bring families together and raise awareness
• Assist families to find ways to address day-to-day needs e.g., childcare, transportation, and self-care activities
• Help families navigate child-serving systems and make informed decisions about their child’s care
• Promote collaborative partnerships between parents, caregivers, and service providers

How do I access PPSP services?

Many states have regional or statewide family-run organizations that either provide, or help families locate, parent peer support services in their communities. These organizations can also assist you in locating support groups in your community.

• To locate a family-run organization in your state, check the members and affiliates of the Family-Run Executive Director Leadership Association ( FREDLA ) and the National Federation of Families for Children’s Mental Health (NFFCMH) .
  • Both have online membership directories that list state organizations who offer parent peer support services. FREDLA also maintains a current list of and contact information for family-run and youth-run organizations per state and region (visit www.fredla.org or request contact information for the family-run organization in your area at info@fredla.org ).
• In addition to helping you locate high quality parent peer support services, family-run organizations offer trainings on mental health topics and advocacy skills like effective communication and navigating the child welfare or juvenile justice systems in your state. They also offer opportunities for networking and mutual support with other families facing similar challenges and needs.

How do I find a support group?

• Support groups allow people to come together to share stories and experiences, provide mutual support, and reduce feelings of isolation and loneliness. There are support groups specifically for parents or caregivers of children with mental and behavioral health challenges, grandparents raising children, and siblings, as well as specific support groups for different types of mental health issues such as depression, attention deficit disorder, substance use, or families with children on the autism spectrum.
• National organizations like the National Alliance on Mental Illness or NAMI , FREDLA , or the NFFCMH have state and local chapters that offer support groups or that can assist families in locating support groups. Similarly, service locators, helplines, and local advocacy organizations often provide families with lists of support groups in their communities.

Support in the Education System

Where do I find information to help my child in school?

Many school districts have special education PTAs (SEPTAs) for parents of children with learning disabilities and other disorders. SEPTAs can be an important source of support and friendship as well as a group of savvy, knowledgeable parents who have firsthand information about doctors, therapists, and specialized programs that can help your child.

• Regardless of the type of challenges your child faces, you are likely to find that you have a lot in common with other members.
• Parents often share the same sense of isolation, challenges accessing the services they need, and concerns about whether or not to try medication.

Online websites such as Wrights Law Special Education Law and Advocacy located online and the National Parent Teacher Association or NPTA offer training, webinars, and literature on federal policies e.g., Individuals with Disabilities Education Act or IDEA, the Americans with Disabilities Act or ADA, and Section 504 of the Rehabilitation Act, parent’s rights, and other advocacy issues such strategies for successful transitions throughout your child’s school career and from school to college or the workforce. Family-run organizations are also a consistent resource for information on navigating the education system and accessing school-based supports. The NPTA Association Special education toolkit includes information and tools to help you understand the special education process and set up a SEPTA in you school, if there isn’t one already established.

What else can I do to help my child in school?

It is important to keep communication open and collaborative. Schedule time to meet with your child’s teacher at the beginning of the school year. You can also email teachers about changes in medication or other things happening in your child’s life that could affect behavior in the classroom. Volunteering in class and on field trips can give you the chance to see how your child is functioning in the school environment, how his or her behavior compared to that of her peers, and whether certain situations were causing problems.

What supports are there to help my child make friends?

It is good to involve your child in youth development programs such as those offered by afterschool programs and community organizations like the YMCA. If your child has difficulty socializing, you might look for a life skills program through community-based service providers in your region. Mentors can boost your child’s self-esteem and allow them to create a bond with someone outside the family. There are mentoring programs that specialize in finding and training mentors for children with special need such as Best Buddies and Brothers Big Sisters.

Other Supports

Are there other types of supports for families?

Local food pantries, religious institutions (churches, mosques, temples, etc.), second hand stores or consignment shops, or programs like Hand Up or Goodwill can help you get free or inexpensive food and household items. Bank On can help you get a bank account. Many family-run organizations can help you locate supports and resources to fit your unique family needs.

What is respite?

Respite is short-term care offered by a trained respite provider to give parents and caregivers a break from caregiving responsibilities. The ARCH National Respite Network and Resource Center helps locate community-based respite care services for family caregivers. Respite includes a variety of support services such as camps and childcare which give parents and caregivers a reprieve from the stress of caregiving.

What is assistive technology?

Assistive technology is any item, piece of equipment, software, or product which is used to increase or improve functioning of persons with disabilities. It can be low tech items made of cardboard or felt, or it can be specialized computers and electronic devices and is tailored to the needs of the child’s disability. Assistive technology helps people who have difficulty speaking, writing, remembering, learning and other skills. The Assistive Technology Industry Association has webinars and informational materials available online. Your State Department of Education may also be able to provide guides to parents and special education professionals.