By Karen Zilberstein, LICSW

Rearing children is hard, and it becomes even more time-consuming and complex when parents are raising children with a disability or mental health challenge or while lacking sufficient financial resources. A large number of families encounter one or more of those conditions. Researchers document that, over the course of their lifetime, one in five American children will suffer a debilitating mental disorder, one in six struggles with a developmental disability, 70 percent will experience a traumatic event, and 43 percent grow up in low-income families.

Any and all of those circumstances put extra demands on parents who are administering high levels of daily care while juggling the need to obtain services and supports. Children with special needs often utilize a range of services that can include specialized schooling, psychotherapy, psychiatry, occupational therapy, physical therapy, sensory integration therapies, social skills training, and/or medical treatments. Since services tend to be decentralized, spread through a labyrinth of different agencies, each requires paperwork, meetings, and coordination.

Complicating the procurement of services is the unfortunate reality that not all communities have the services residents need. If a family lives in a school district that lacks sufficient funding and is overwhelmed by a large, high needs population, putting services in place can be especially hard. Similar difficulties also exist in the mental health field. A nationwide shortage of child psychiatrists and psychotherapists means that children can wait months before receiving treatment. As a consequence, parents are forced to become experts both on their children’s needs and on how to obtain services.

For parents of children with special needs, who often feel isolated because their children’s difficulties limit the family’s ability to partake in community activities, quality services make a big difference. Social supports, whether they are formal or informal, are robustly associated with parent’s and children’s well-being. Establishing networks of help is important.

Despite existing roadblocks, there are ways parents can ensure they get the resources they need:

Be clear about what you need

There are a range of programs and services available, each focusing on different aspects of need. Financial help, housing resources, counseling for children and parents, special education, support groups, recreational programs, or other types of therapies, such as physical therapy or occupational therapy, are available through clinics, hospitals, private nonprofit agencies, and statewide programs such the Department of Developmental Services (DDS) or the Department of Mental Health (DMH).

It can be overwhelming to access many resources at once, so prioritizing what your child and family needs is an important first step. Think through, for instance, whether a child’s academic, mental health, or social difficulties are the cause or result of other disabilities. What stresses do you and your child experience that need to be alleviated? Which interventions should come first or likely to be most fruitful? Public schools can provide comprehensive assessments to help answer those questions or you can obtain referrals from your child’s pediatrician. If financial stress is getting in the way of following through on appointments and tasks, ask about which local agencies provide material supports and financial assistance.

Research existing resources

If your child qualifies for services through DDS or DMH, a case manager will be assigned that can connect the family to numerous resources. The case manager helps parents understand the needs of the child and family and what local programs provide those services.  Case managers often know about recreational activities for children with specialized needs, support groups for parents and children, and how to access educational services. They can also facilitate referrals for mental health services, and sometimes have funding for special equipment or classes from which a child may benefit.

When children do not qualify for either of those departments, parents can learn about available services in other ways. Ask trusted friends, other parents, and professionals in your community such as pediatricians and school counselors. Call local social services agencies to find out what they offer or search the Internet.

There are a number of national organizations that provide grants to families. They host online applications. One example is the Sunshine Foundation, which provides funds to fulfill the dreams of chronically or seriously ill, physically challenged, or abused children, whose families suffer financial strain. Another is Modest Needs, which provides short-term financial assistance to families in crisis.

Make sure services are a good fit for your family

While agencies offer a selection of services, only you can decide what works best for your family. Not just the types of services matter, but the “fit” you and your child feel with the workers. You will feel most helped by workers who show understanding of and respect for you and your child, and with whom you feel comfortable talking freely. Pay particular attention to cultural differences that may cause misunderstandings and tension. If problems exist, address them with the provider.  Explain what you are looking for and what is getting in the way. If you cannot reconcile the differences, move on to someone better fitted to your family.

Good providers should explain their interventions and the reasons for implementing them. They should show warmth and be open to answering your questions and concerns. In addition, they should coordinate care with any other professionals with whom you or child is working. When a child and family receive services from many different sources, and they become siloed rather than integrated, gains are slowed. Families can feel overwhelmed by too much or contradictory advice.

Find informal supports

The most important factor underlying emotional well-being is social support. Studies show that the existence of material and emotional supports greatly enhances the well-being of parents as well as helps dampen the stress associated with poverty and financial difficulties.

Parents already feeling hindered by financial and caretaking demands may feel too busy and overwhelmed to nurture relationships. But doing so pays off. Clarify with family members how they can help. Cultivate the assistance of neighbors, school counselors, and other parents. Find a support group where you can meet parents in similar positions. Enroll your child in recreational activities in which they can meet other children and you can meet other parents. If the cost is an issue, ask for a scholarship or see if DMH or DDS can pay.

Don’t give up

Even when waiting lists and shortages of services exist, the squeaky well gets the grease. Be persistent. Call providers every few weeks to remind them of your continued interest and to get updates on when the service will become available. Continue to talk with other parents and professionals to find out about alternative options.

Your local and state legislators can also help. Call them and let them know about your situation. They may be able to engage resources. It is extremely important for elected officials to know the needs of their constituents and when they are not being met. Legislators are taxed with the responsibility to take action and rectify difficulties, especially those requiring local or statewide policy and funding initiatives. Parents and professionals who live in communities with a dearth of quality services need to unite and demand better.

A list of resources for parents struggling with a variety of different difficulties can be found in the appendix of my book, Parents under Pressure: Struggling to Raise Children in an Unequal America.

Karen Zilberstein is a psychotherapist and Clinical Director of A Home Within, which provides pro bono therapy for individuals who have experienced foster care. A former adjunct professor at Smith College School for Social Work, she has published numerous articles on psychotherapy and parenting, and has co-authored a children’s book, Calming Stormy Feelings: A Child’s Introduction to Psychotherapy. Her narrative nonfiction book, Parents under Pressure: Struggling to Raise Children in an Unequal America was released in 2019 and has won two Next Generation Indie Book Awards.