Steps Toward Evidence-Based Practices for Parents
with Mental Illness and their Families
Invisible Children's Program
Goshen, NY
Program Description
The Invisible Children's Program (ICP) is a nationally recognized program for parents with a mental illness and their children. ICP is a program of Mental Health Association in Orange County, Inc. (MHA), a private, not for profit organization, in Goshen, New York. ICP embraces two guiding principles: 1) Parents want to be the best parents they can be; and 2) the act of parenting is a significant, oftentimes healing role for adults with mental illness. This innovative program's central focus is to empower parents and assist them in the creation of a safe and nurturing environment for their children while supporting efforts to keep the family unit together. ICP offers 24-hour family case management services including referrals and linkages to community resources, crisis services and advocacy, and support services including respite child care, parenting education, access to financial assistance, and supported education and employment as well as supported housing services. ICP families benefit from services offered by the MHA including a 24-hour helpline, Compeer, consumer run support groups, vocational training and supported education.
Program History
ICP began as part of a larger effort to increase awareness about parents with mental illness and their families. In 1990 Lucinda Sloan-Mallen, MHA's Executive Director at the time, observed that mental health consumers in MHA programs were bearing and parenting children. Given her personal history as the child of a single mother with Bipolar Disorder, she understood firsthand the struggles of these families. Sloan-Mallen knew parents with mental illness and their families were not a targeted population for policy-makers, service providers or advocates, and that this identity was often disregarded for individuals with mental illness. She also knew that ignoring the parenting role resulted in inappropriate and inadequate services for families in need of support. The name, "Invisible Children" describes the children of parents with mental illness overlooked by the traditional mental health system.
In 1990, the prevalence of parenthood among adults with mental illness in Orange County was unknown. In 1991, Sloan-Mallen, the local Department of Mental Health, and the Middletown Psychiatric Center surveyed a sample of clients receiving public mental health services. Results indicated that 45% of persons receiving public mental health services had children under 18. Forty-five percent of female, Intensive Case Management clients, 40% of the homeless mentally ill, and 25% of supported housing clients had children. Most parents were single women without custody of their children. Parents averaged 2.1 children.
1993 was significant for parents with mental illness and their families at both the state and local level in New York. The New York State Office of Mental Health (NYSOMH) and the Department of Social Services (DSS) formed a State Task Force on Mentally Ill Parents with Young Children. Public hearings provided testimony from consumers and providers. These testimonies led to recommendations on systems changes and improvements in service provision for families in which a parent has a mental illness. The Associate Commissioner of the NYSOMH, Dr. Andrea Blanch, worked closely with Sloan-Mallen to create statewide interest in addressing the needs of parents with mental illness and their children. Locally, the Orange County MHA created ICP, serving 10 families.
The work of the Task Force led to the development of the New York State Parents with Psychiatric Disabilities Support Project in 1994, which has directly impacted how parents with mental illness are served in the New York public mental health system. Specifically, state policies have been created to address parenting issues such as determining parental status during hospital admissions, incorporating parenting issues into discharge planning, and supporting children's visitation of hospitalized parents. Several statewide conferences on the concerns and issues of parents with mental illness and their families were held in New York between 1994 and 1998.
To date, ICP has served over 500 persons in families where a parent has a serious and chronic mental illness.
Funding History
Original ICP funding came from the New York Office of Mental Health (NYOMH). In 1994, ICP received a $250,000, two-year demonstration grant from the New York State Department of Health to study the impact of early intervention for children ages zero to three, at-risk from parental mental illness and co-occurring disorders. At the end of two years, the majority of ICP funds shifted back to NYOMH. In 1995, ICP received a five-year HUD Shelter Plus Care grant to house and provide case management for six additional families. Other monies include the United Way (with a match from MHA), MHA fundraising, and state reinvestment money, money saved from closing state hospitals to fund community services. ICP does not receive third-party reimbursement for any of its services.
The true costs of ICP can not be reflected on paper. Programs serving families rather than individual "identified clients" require "flexible funding" for costs not covered by traditional adult mental health funding streams. For example, ICP strives to enhance and normalize the life of children, which may include buying sneakers and clothes, goods that don't always fit into line item categories. Much of ICP's flexible monies are provided by Orange County MHA.
Mental health funding in New York has changed within the last ten years. Funding has shifted away from statewide initiatives implemented at the county level. Currently, mental health funding is driven more by local politics and idiosyncrasies, with little continuity between counties.
Target Population
ICP works with adult (18+ years) parents with serious mental illness who are eligible for state/county public mental health services and case management.
Theory and Assumptions
Mission. ICP shares in the overall service mission of MHA (see below).
Program Goals. The goals of ICP are to "empower parents and assist them in the creation of a safe and nurturing environment for their children while supporting efforts in keeping the family unit together."
Theoretical Orientation. ICP embodies a family-centered/family-strengths case management model. ICP staff work with families as a team to assess strengths and determine needs. The abilities of families are the focus of care. ICP has a "whatever it takes" philosophy - they'll do whatever it takes to help a family. ICP, with support of MHA, has the ability to flex time, services and funds outside the traditional parameters inherent in most community mental health agencies.
ICP's approach includes embracing the following assumptions: Parents want to be the best parents they can be; Parents have strengths; Parents may require services from multiple systems; Children are usually better off with their parents; There are instances in which a parent may not be the best caregiver for his/her child, Families need and deserve support; Mental illness is not the cause of good or bad parenting; Enhanced parenting leads to enhanced child development; Supporting parenting contributes to recovery from mental illness; and Dependable, consistent relationships are therapeutic.
Trust and respect between ICP staff and families are paramount. One case manager states, "I approach families with the same care that I would a friendship. You need to be real with people. Some providers are uncomfortable with this level of involvement." Staff creates meaningful relationships with families, getting to know them as people, not just as clients. One mother recounts, "I saw an MHA staff person at the local fair and I couldn't believe she came over and talked to me like a person - I never expected that."
Community Context
Local History. Orange County is an ethnically diverse community in rural, upstate New York, approximately two hours from New York City. Orange County has traditionally been an agricultural community. The last five years have seen an influx of residents moving north from Manhattan, resulting in an increasing population and changing socioeconomic climate.
Community Strengths and Weaknesses. While Orange County is a politically conservative community, MHA and ICP have created strong relationships with local providers. "It's a fluke that MHA has been able to fit into a very conservative community. This has happened by developing trust, showing success, following through and being recognized at a national level." A small community allows for longstanding relationships between providers, which are vital to securing services for ICP's vulnerable families.
Public transportation is extremely limited, and safe and affordable housing is scarce. Available housing is often in dangerous neighborhoods that are inappropriate for families.
Mental Health Resources. Stigma about mental illness is a large problem in Orange County. Providers from others systems (e.g., child welfare, education) as well as family and community members often need education to debunk the many myths about mental illness. The local mental health system lacks specialized services for families including daycare during treatment and therapy and children's visitations during hospitalizations.
Community Collaborators
ICP collaborates with multiple agencies and systems at the local and state level, including policy administrators (e.g., Mental Health Association in New York State, DSS, NYSOMH, Department of Health), providers (local psychiatric centers, therapists, social workers), and legal advisors (lawyers, judges). ICP has strong relationships with philanthropic organizations including Jewish Family Services and the United Way. In addition, ICP has participated in research, evaluation, and replication projects with the University of Illinois in Chicago, the University of Massachusetts Medical School, and the National Mental Health Association.
ICP is unique in its ability to coordinate providers and services around individual families and administrators at the larger policy-level. ICP promotes change at the local, state and national level around how services are (or are not) provided to families where a parent has a mental illness. MHA Executive Director Lucinda Sloan-Mallen explains, "We want to change the way people do business," to facilitate a shift in thinking from "identified clients" to thinking about families, a concept the adult mental health system has yet to embrace.
Methods of Collaboration
From ICP's beginnings, Sloan-Mallen was purposeful in coordinating key stakeholders to think about families where a parent has a mental. "ICP is valuable in bringing different players with different mandates to the table," stated an DSS administrator.
At the individual, family level, ICP facilitates providers wrapping services around families. ICP attends, and often organizes, Network Meetings where parents, school, mental health, DSS, and other invested parties coordinate services with a family. ICP is especially powerful in helping parents and families find their voice and advocating for families unable to advocate for themselves. A local mental health provider noted, "ICP gives consumers a voice, and many of us have learned from this." ICP educates providers to family strengths, reinforcing that persons with mental illness can parent and care for children. ICP gains credibility, especially from DSS, by identifying when children are at-risk and, when necessary, advocating for out-of-home placement.
At the administrative, policy level, ICP helps agencies see the benefit of collaborating around families. For example, families involved with ICP require fewer out of home placements, one of DSS' largest expenses. ICP involvement with a family frees up scarce DSS resources that can be redirected towards other families. "ICP helps families, which in turn helps all other agencies achieve their goals for their families."
Collaborators were clear to point out that successfully "selling" ICP requires answering the question, "What's in it for me?" Providers, funders, and administrators will invest in programs that in some way benefit them. Collaborators will support program that ease their service provision and attract money. There needs to be benefit for investors to facilitate a buy-in. "Selling the program to legislators requires a focus on outcomes and a personal approach."
Agency Context
Mission and Goals. "Mental Health Association of Orange County, Inc. seeks to promote the mental health and emotional well-being of Orange County residents, working towards the prevention of mental illnesses and developmental disabilities. In partnership with consumers and their families, MHA strives to fulfill its mission through direct services, public education, advocacy and responsiveness in times of community emergency."
"We share a belief that every person has dignity and is to be treated with respect, compassion and acceptance. MHA values the contributions of our members, volunteers and staff in providing quality, cost-effective services."
Agency Characteristics. MHA is the primary community mental health provider for Orange County, with 50 full-time employees, two clerical support staff, and a board of directors. MHA averages over 300 volunteers a years, who assist with fund-raisers, answering helplines, and providing direct services. MHA provides various mental health services including crisis intervention and prevention, rehabilitative social clubs, rape and incest survivor support groups, job placement and respite services, 24-hour hotline, case management, compeer and early intervention programs. MHA contracts out for clinical services.
ICP has two full-time staff: a project coordinator and a case manager, both of whom have bachelor's degrees and previous experience providing mental health services at MHA. ICP contracts for services both within MHA (e.g., respite workers) and with consultants (e.g., in-home clinical consultants, art therapists). MHA is funded primarily (93%) through state, county, and federal grants. Additional funding comes from private contributions, membership drives, memorial endowments, and community fund-raisers.
Teamwork is part of the MHA culture. "It has to be because we're under-funded. A positive consequence of this is teamwork and unity." Support at all agency levels, from the line staff to the board of directors, is crucial. Agency staff respect and support one other, and believe in the importance of the work. The mission of the agency trickles down to all programs.
Program Model: Services and Interventions
ICP offers a variety of services including 24-hour case management, supported housing, respite childcare, family crisis planning, advocacy with schools, DSS and courts, support groups, vocational training, supported education, information and referral, pregnancy and post-partum education, children's art therapy, and parenting skills support. In-home clinical services are provided via consultants.
Most ICP services are provided in families' homes. Since Orange County is such a rural area, ICP staff often transports families to appointments and accompanies families wherever needed, including schools, doctor's visits, and meetings with DSS. ICP staff try not to be "the case manager with the clipboard," instead creating meaningful relationships with families and modeling appropriate parenting behaviors.
Evaluation
Family Demographics. At any given time, ICP serves approximately 16 families. While the majority of clients are mothers (80%), some fathers (20%) are the identified client, and many families have two-parent households. Half of families served are Caucasian and half are African American. The majority of children are between 3 and 12; almost 50% of parents are 30 to 39.
Diagnoses. Diagnoses of parents include Manic Depressive Disorder, Schizophrenia, Anxiety, Depression, and Personality Disorders. Fifty percent of children served have identified mental health needs.
Co-occurring Disorders and Issues. Fifty percent of parents are dually diagnosed with substance abuse or developmental disabilities or have histories of trauma or domestic violence. All families experience some co-occurring issues such as poverty or homelessness. Most parents (80%) have custody of their children, but many families are at-risk for children's out-of-home placement. Almost half of ICP families live in HUD-funded housing, while others live in supported or independent apartments.
Family Outcomes. ICP case managers identify successful outcomes for families as increased self-esteem, increased confidence, increased self-determination, increased residential stability and independent living and decreased hospitalizations. Positive outcomes for children include increased school attendance and performance, improved behavioral control and communication skills, and a decrease in out-of-home placements.
At the policy level, success includes increased awareness of and knowledge about parents with mental illness among policy-makers and providers including parenting and treatment planning and simply asking the question: "Are you a parent?" Goals for the future include steering the New York Office of Mental Health towards a family-centered model of mental health care. At the local level, ICP is successful if it increases community awareness and knowledge about parents with mental illness.
In 2000, ICP received one year of SAMHSA/CMHS-funding to evaluate the program's cost-efficiency. ICP has contracted with the University of Massachusetts Medical School to explore families' involvement with DSS pre and post ICP involvement. Researchers are analyzing DSS and ICP costs to determine if ICP is a cost-efficient alternative for families where a parent has a mental illness. Specifically, are children less involved with DSS since working with ICP? Are there fewer out-of-home placements? The case study format will include family interviews as well as DSS and ICP case manager interviews in an effort to "tell the story" of families experiences before and since working with ICP. Focus on cost-efficiency will help frame working with families as a valuable, preventative service.
Client Path
Families are referred to ICP through Orange County mental health professionals, DSS preventive units, foster care and outpatient clinics. Few applications come from prisons and self-referrals. ICP notes an increase in referrals from schools, as teachers and administrators see problems within families that are beyond the scope of school goverened services.
To be eligible for ICP services, the parent (the identified client) must meet New York State Office of Mental Health criteria for serious and persistent mental illness. Eligible families are placed on a waiting list and are referred to other services both within and separate from MHA.
When an opening becomes available, ICP case managers screen wait listed families. ICP meets with parents in their homes to identify risk factors including the status of benefits, levels of services, community linkages, and the risk of out-of-home placement for children and determine families' need and interest in receiving services. Risk is the main criteria for family selection for ICP.
Selected families complete a one-hour intake with an ICP case manager. ICP collects information on schools, social security and Medicaid, designated contact people, and completes consent forms. Next, the ICP case manager and parent begin service planning, identifying strengths and goals, and areas needing assistance. Typical family goals include helping families stay together, foraging links with public services, securing transportation, and advocating for children's needs. There are no formal assessments of adult or children's functioning. Oftentimes, families have difficulty identifying strengths and need prompting. Typical family strengths having informal support systems (e.g., church), being motivated to improve their lives, and keeping their families together. ICP's first few visits are scheduled when the whole family is present, allowing time to establish comfortable relationships.
There is no time limit to families' involvement with ICP. On average, families stay with ICP from two to three years: one family has been with ICP for seven years. ICP can serve up to 18 families at one time. The number of family contacts depends on the intensity of services required. Most families are visited at least once weekly, interspersed with telephone contact with case managers. For most families, the intensity of contact with ICP decreases over time. Families can remain with ICP as long as services are still needed and minor children are still living in the home.
A Success Story
Shelly is a 35 year old, African American woman with a 10 year old daughter, Samantha. Shelly is diagnosed with Schizoaffective Disorder and has a history of psychiatric hospitalizations. Shelly and Samantha have been involved with ICP since 1996. At time of referral, Shelly was recently discharged from a psychiatric hospital, living with her daughter in a homeless shelter. Shelly, who had previously worked as a nurse, had no services, had difficulty maintaining her medications and had little social support.
ICP and Shelly worked together to create a family service plan, establishing her family system, support network, strengths and barriers. Like many ICP families, Shelly initially had difficulty identifying her strengths. ICP was quick to connect Shelly and Samantha with Crystal Run, a local non-profit housing program that often partners with ICP around families.
Securing safe housing was a turning point for Shelly and her daughter. Shelly was able to complete a day treatment program, achieve medication compliance, establish a plan for Samantha in case of hospitalization, and create a support network, primarily through her local church. Shelly returned to work full-time as a case manager for another MHA program.
ICP is careful not to set limits or boundaries for families, believing families know what is best for them. Since working with ICP, Shelly has had only one psychiatric hospitalization. "Shelly is happy, confident, and has increased self-esteem. This happened through increased support - before ICP, she had none." (Shelly's ICP case manager)
Challenges
At the program level, ICP is most challenged by the large waiting list for enrollment. Families may wait for 2-3 years before starting with ICP. Ironically, not being accepted into ICP may increase a family's level of risk since risk factors increase the longer families are not receiving appropriate services. MHA is serving more dually diagnosed mentally ill/developmentally disabled clients. Some of these clients are parents (there are currently three MR/DD in ICP), and ICP needs further resources to serve these families. Finally, ICP case managers are challenged by the constantly changing resources in Orange County.
At the systems level, funding is always a concern. Funding streams do not represent how most agencies provide services. The true cost of ICP is not accurately reflected on paper. Adult state mental health money is for "identified clients," not for families. Therefore, ICP must find flexible money from other areas to cover "family costs" not addressed by traditional mental health funding.
What's Missing from ICP?
Families were unable to identify anything missing from ICP. As one family said, "We have what we need." Families were aware of the uniqueness of a program like ICP and were concerned that only a few lucky families were able to access such services.
Next Steps
In partnership with the National Mental Health Association, SAMHSA/Center for Mental Health Services, and the U.S. Department of Health, ICP is providing technical assistance to five NMHA affiliates addressing the needs of parents with mental illness and their families. During this one-year project, MHAs in New York, Tennessee, New Jersey and Virginia will undertake collaborative strategic planning efforts in their communities in an effort to plan for and replicate the ICP model of service delivery.
ICP hopes their program will be replicated, not duplicated. "Our dream is to have our core values incorporated into how other people conduct business, not to have ICPs all over the place."
ICP's Vision for the Future
ICP plans to continue their current path - to show program success, secure investment from local and state systems administrators, and to gain national recognition. ICP sells its program by sharing families' stories and talking about the issues no one else wanted to talk about.
As managed care and Medicaid increasingly become primary funders of mental health services, ICP is invested in having a clearly articulated product with proven outcomes. If ICP can show a decrease in costs (e.g., decreased hospitalizations), this program becomes an attractive service to managed care organizations interested in the bottom line. ICP needs to be able to compete in the competitive market.
ICP is also looking for crossover areas with other service systems. ICP is interested in integrated funding streams that address families needs rather than funneling children and adults into separate service systems. Money should meet the needs of families rather than trying to make the needs of families fit into available funding streams.
Quotes from Families
"With ICP we learned that today is just one day - we can do it. Before, we would yell a lot and quickly punish our daughter."
"Anything they (ICP) tell us to try, we do."
"Normally, I'm screaming and my daughter is screaming. Now, I have Monique (ICP case manager) to talk to. When we stop crying, we can talk about what's going on. I'm really learning."
"Our children are our motivators. We've been through a lot of problems. We have too much to lose now."
"With ICP I have a place to live, someone to call, someone who cares about me, someone I trust and someone who respects me."
Quotes from ICP Case Managers
"We'll go anywhere for a family if they feel they need an advocate."
"Shelly has gone from a cog in a wheel to a motivator of change."
"The bottom line is that parents love and want to be with their children."
Quotes from Community Collaborators
"ICP is a good opportunity for community planning and growth."
"Before ICP, we'd treat mental illness as separate from parenting."
Logic Model: Invisible Children's Program
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