Families and Youth Have a Voice on Mental Health Matters Through FYSPRT

A Brief Overview

  • FYSPRT (pronounced fiss-burt) is a hard acronym to learn, but it’s worth the effort for families and young people who want to talk about improving mental healthcare systems.
  • Here’s what FYSPRT means: Family members, Youth and System Partners (professionals) get together at a “Round Table” (meaning everyone has an equal voice) to talk about issues related to emotional distress, mental illness and/or substance-use disorder. All participants share ideas about what helps and what could make things better.
  • The Washington State Health Care Authority (HCA) provides a map of the 10 FYSPRT regions and includes contact information for local leaders and a schedule of where/when meetings are held.
  • FYSPRT began after a class-action lawsuit against the state, TR v Dreyfus. The litigation resulted in development of the state’s out-patient mental-health services program for youth—Wraparound with Intensive Services (WISe).
  • FYSPRT is a place where families provide feedback about WISe, but all community members are welcome—regardless of age or agency affiliation.
  • Some regional FYSPRTs sponsor separate meetings and social events for youth.

Full Article

Parents and young people who struggle with emotional distress, mental illness and/or substance-use disorder can feel powerless to affect change in a complicated medical system. The Family, Youth and System Partner Round Table (FYSPRT) provides a meeting space for family members and professionals to talk about what’s working and what isn’t working in mental healthcare. The groups also provide informal networking and can provide ways for families to meet up and support one another under challenging circumstances.

The state sponsors 10 FYSPRT groups to serve every county: A list of the groups and which counties they serve is included at the end of this article. Each group reports to a statewide FYSPRT, which provides information to state government to influence policy. The Washington State Health Care Authority (HCA) provides a map of the FYSPRT regions and includes contact information for local leaders and a schedule of where/when meetings are held.

FYSPRT began as part of a class-action lawsuit against the state, referred to as TR v Dreyfus. The litigation began in 2009, and settlements were mediated in 2012-13. The federal court found that Washington wasn’t providing adequate mental-health services to youth and required that the state start delivering intensive community-based mental-health treatment. The state responded by developing the Wraparound with Intensive Services (WISe) program for youth under 21 who are eligible for Medicaid. WISe teams provide a wide range of therapies and supports with a goal to keep the young person out of the hospital, which costs more and can be traumatizing.

Young people under 18 who need residential care are referred to the Children’s Long-Term Inpatient program: PAVE’s website provides an article about CLIP.

To provide accountability for the delivery of WISe services, the state created FYSPRT as a forum for families to provide feedback about how the program is working. The mission is to provide an equal platform for everyone within the community to strengthen resources and create new approaches to address behavioral needs of children and youth.

 

FYSPRT provides a space where youth impacted by behavioral health issues and their family members can share ideas about what works well and what would work better. The FYSPRT model is based on the belief that everyone’s unique perspective is equally important, and everyone is invited. For many parents and youth, FYSPRT becomes a place to bond and connect to support one another. Some regional FYSPRTs include separate meetings for youth, and those groups can become a key social outlet.

 

FYSPRT meetings are open to all interested community members. Each community has unique participants depending on what agencies work in the cities and towns within the region.

Staff who serve families through WISe are key participants. Other attendees are case managers from the state’s Medicaid-provider agencies, behavioral health counselors, foster-care workers, staff of homeless programs and staff and volunteers from affiliates of the National Alliance on Mental Illness (NAMI). Other participants are leaders of support groups for youth in recovery or working with issues related to gender identity or sexuality. PAVE staff are regular attendees in many regions, and PAVE manages the Salish FYSPRT program.

Every area of the state of Washington has its own FYSPRT, overseen by the Health Care Authority.  Each of the ten FYSPRT regions is comprised of a single county or up to eight adjoining counties. In order to create greater participation from the general public, transportation and childcare stipends are available for families and youth in most areas. Some groups provide free meals for everyone and/or gift card incentives for the families and young people who attend.

Here are links to each regional FYSPRT’s website and a list of the counties each represents:

Great Rivers Regional FYSPRT – Cowlitz, Grays Harbor, Lewis, Pacific

HI-FYVE – Pierce

King County’s Family Youth Council – King

North Central Washington FYSPRT – Chelan, Douglas, Grant, Okanogan

North Sound Youth and Family Coalition – Island, San Juan, Snohomish, Skagit, Whatcom

Northeast FYSPRT – Adams, Ferry, Lincoln, Pend Oreille, Spokane, Stevens

Salish FYSPRT – Clallam, Jefferson, Kitsap

Southeast FYSPRT – Asotin, Benton, Columbia, Franklin, Garfield, Kittitas, Whitman, Yakima

Southwest FYSPRT – Clark, Klickitat, Skamania

System of Care Partnership – Mason, Thurston

Self-Care is Critical for Caregivers with Unique Challenges

Consider that 20 percent of the population has a disability. That’s one-fifth of all people who need extra support! Caregivers for those high-needs individuals may experience compassion fatigue and stress at high levels. National Geographic’s film, Stress, Portrait of a Killer, provides an overview of the risks and includes a story of parents who care for a child with special needs (See Minute 38 for that section of the report). 

The way to manage chronic stress is consistent self-care. Here are ways to stay mentally and physically healthy. In other words, here’s how caregivers can pull on that oxygen mask first in order to be well enough to assist others!

1. Connect

Meet up with people who get what you are going through. Schedule coffee with another parent with similar challenges on a regular basis. Parents often find each other at school, but here are other ideas about where you might find one another: Special Olympics practice, Special Needs Parent-Teacher Association, extracurricular events. A local Parent-to-Parent network can help by matching parents with similar interests or by providing a regular parent-group meeting.  

2. Sleep

The body uses sleep to recover, heal, and process stress. Here are ideas if anxiety or intrusive thinking interrupts sleep: Turn off screens after 7 p.m.—or use a blue-light filter; find sleep-music beats or a hypnosis program online; drink a calming herbal tea, such as chamomile; journal to process thoughts before bed. For more ideas, visit Sleepfoundation.org.

3. Exercise

Go for a walk, practice yoga, swim, wrestle with your kids, chop wood, work in the yard, or have a living-room dance party. Moving releases feel-good body chemicals. Check out the Mayo Clinic for more information on exercise and stress.

4. Be Mindful

Mindfulness can be as simple as taking time to notice your breath and focus attention there. Other ways to focus the mind for a general calming benefit: meditate, color, work on a car, build something, do art, put together a puzzle. The key is to find a quiet place that feels nurturing and calming. For more resources, check out mindful.org.

5. Make Time

An overfull calendar or unscheduled chaos can take over the day. A carefully organized calendar, managed with realistic boundaries, can help: If someone requests time, the calendar clearly shows when a meeting is possible. Parents can set SMART goals for a day, week or month: Assess whether the goals are Specific, Measurable, Achievable, Relevant and bound by a clear Timeframe. PAVE’s article on SMART Goals can help parents manage time while learning about how to assist with educational planning. Another resource with time-management tools: calendar.com: Why Stress Management and Time Management Go Hand in Hand.

6. Seek Help

Respite care provides temporary relief for a primary caregiver. In Washington State, a resource to find respite providers is Lifespan Respite. Parents of children with disabilities can apply through the Developmental Disabilities Administration (DDA) to seek eligibility for in- home personal care services and to request a waiver for respite care. For further detail about how to access services, refer to wapave.org DDA Access video or Informingfamilies.org DDA services.

Relatives Raising Children Face Unique Challenges

Imagine a knock on the front door at night. Outside is a police officer, bringing a child to the safe-haven of a grandparent’s home. A grandparent might experience fear and confusion, trying to reconcile what has happened in the family and how to support the child. This is how a journey toward kinship care can begin.

May is Kinship Awareness Month, an opportunity to acknowledge relatives other than parents raising children. Nearly 50,000 family members in Washington are kinship caregivers. Many of the children in their care have experienced trauma and need special education or uniquely designed physical- or mental-health services.

Relatives who provide kinship care can qualify for state support. The Washington State Department of Social and Health Services (DSHS) provides a resource guide about kinship care that includes information about benefits and services, health care, legal issues and more. DSHS manages the kinship program as part of its Aging and Long-Term Support Administration (ALTSA).

Reasons that relatives other than parents raise children vary. Some family members are granted custody by courts involved in the child welfare system. In other circumstances, law enforcement places children with relatives after finding parents unfit. Parents may have died, or a relative may have intervened because of issues related to addiction or abuse. Some kinship caregivers are meeting a grandchild, niece, or nephew for the first time when that child needs a new home.

A child might arrive without any possessions. The financial cost and life disruption can significantly impact the relative providing kinship care. In Washington, the Kinship Navigator program can help. This program was adopted by the state in 2003.  

A Kinship Navigator can direct family caregivers to a variety of community resources related to healthcare, finances, legal services, support groups, training, child care and emergency funds. Kinship Navigators also can explain how to apply for federal and state benefits. The Kinship Navigator helps families establish or maintain greater self-sufficiency and long-term stability, often with a goal to keep children out of foster care.

A navigator can help family caregivers get involved with support groups and learn to balance the needs of the child with a potentially complicated relationship with the child’s parents. Daycare options can be located, and children might gain access to recreational and social activities to help them find belonging in a new life circumstance.

In spring 2019, Governor Jay Inslee signed into law Senate Bill 5641 to create a statewide kinship care legal aid coordinator. The state budget was expanded to include $500,000 for growth of the Kinship Care Support Program and $468,000 to fund Tribal Navigators for Native American families. One of the bill’s supporters was Rep. Eric Pettigrew, who in 2002 helped create a statewide Kinship Care Oversight Committee that led to development of the state’s kinship programming.

The Seattle Times published an article Dec. 28, 2018, about kinship care and reimbursement rates in comparison to foster care. According to the Times, about 43,000 relatives other than parents are raising children in Washington State. More than 90 percent of those caregivers are grandparents. The article includes data that most families choose not to become legal foster parents because of state scrutiny over the welfare system. Informal kinship-care arrangements are four times more common than formal foster care.

Generations United, a Washington, D.C.-based nonprofit, collects data about government costs and savings related to kinship care. The agency coordinates projects to strengthen intergenerational connections and offers ways for families to advocate for system improvements to benefit children, youth and older adults.

The Military Parent Technical Assistance Center, The Branch, provides specific guidance about benefits and other issues that impact short- and long-term kinship caregivers in military families.

I want the kind with the people and the pictures

By John O’Brien

After a Difficult Start…

Institutionalized from age three to twenty-three in a place where “they treated us like animals”– Mike has composed a good life, taking many valued roles: husband, father, worker, home owner, friend, organizer, advocate, mentor, teacher, neighbor.[1] Anticipating the changes that come with aging, Mike requested funding for a person-centered plan from his case manager (a service option in his state). The case manager said that it was unnecessary for him to spend any of his budget on a plan because a new Federal Rule requires that Mike’s annual plan of care meeting be a person-centered plan. Mike, who has participated in many person-centered plans organized through self-advocacy, asked some questions about the required plan and concluded, “I still want the kind with the people and the pictures.”

Regulations that require a person-centered plan as a condition of receiving Medicaid Waiver funds introduce a distinction between Want-to-plans and Have-to-plans. Each can make a positive contribution; both must creatively respond to constraints. A good Want-to-plan supports discovery of possibilities and life direction and mobilizes a person’s allies at important moments in their lives. A good Have-to plan gives a person effective control of the Medicaid waiver funded assistance they rely on. Committed and skilled facilitators with the time necessary to prepare and follow-up make a difference to the impact of both kinds of plan. How well either process works for a person depends on conditions outside the planning process: the extent, diversity and resourcefulness of the person’s social network; the openness of the person’s community; the flexibility and responsiveness of providers of necessary assistance; the sufficiency of public funds for necessary assistance and the means for people to control those funds. Good plans will identify the current reality of these conditions and consider how to engage them.

Mike’s is a want-to-plan. At his initiative, he and his invited allies (the people) collaborate to create a customized process to address his desire to deal proactively with the new responsibilities and increasing impairments that show up with aging. Mike chose Michele, an experienced facilitator, to guide the process. Their agreement makes it clear that Michele is responsible for facilitating a process of change over time, not just a meeting.[1] A graphic record (the pictures), created by Alex, provides an energizing memory of what emerges, a way to track and update action plans, and a way to orient new people to Mike’s intentions.[2] Occasional check-ins and revisions guide continuing action. One-to-one meetings assist Mike in sorting through all the suggestions and offers of help he receives to assure a good fit with who he is. Mike will bring some the information generated by this work to inform the required annual person-centered support plan, but his Want-to-Plan does not substitute for it.

Mike’s experience unfolds under highly favorable conditions for any person-centered plan. He has a strong desire to assure his wife and himself the best possible old age. Reciprocity for decades of generous neighborliness, concern for co-workers and leadership in advocacy give him a diverse network to call on. He is not inhibited in asking for help when he needs it. The help he needs is largely with navigating the unfamiliar territory of selling and buying property and preparing wills and other necessary documents and demands no change in his current paid services. Hard work and careful management has accumulated equity in family home. Many Want-to-plans will need to include provision for strengthening or establishing the social and material conditions for moving toward a desirable future.

Want-to-plans can also originate in a person’s positive response to an invitation to join a process of organizational change. This sort of plan poses a challenge that an organization must stretch its capacities to meet.

Have-to-plans are a necessary step in determining expenditure of Medicaid funds on services to meet the assessed needs of eligible people. They are the final responsibility of system staff assigned to coordinate services. While the process can vary to accommodate a person’s preferences, the process and resulting plan must comply with detailed standards. The New York OPWDD Person Centered Planning Regulation Checklist enumerates 23 requirements, 21 of which track US Federal Regulations.[3]

Have-to-plans serve a worthy purpose. The rules set conditions for the person to direct the meeting, understand the results and assure that the person-centered service plan documents the person’s needs strengths, preferences, goals and appropriate services.

This checklist item, based on a Federal requirement, identifies the intended result of Have-to plans:

2‐5. The plan documents the necessary and appropriate services and supports that are based on the individual’s preferences and needs and which will assist the person to achieve his/her identified goals. [Complies with CFR 441.301©(2)(v)]

This form of words sets Have-to-plans in the context of publicly funded disability services. Offering increased influence on which available provider(s) will serve a person and how those services will be of assistance is a clear benefit of Have-to-plans when there is a real choice among providers with a capacity to individualize supports.

This standard also locates a tension that constrains Have-to-plans as two impulses struggle with each other within the same sentence. One impulse, energized by commitment to self direction and the development of people’s strengths, expresses the life a person wants to live and the supports that they prefer to live that life. The other, tied to the historical anomaly of funding US disability support as if it were a medical service, aims to select necessary and appropriate services that are clearly linked to professionally assessed need. State policy can bias the struggle toward one impulse or the other. In some states[1] the person centered plan is bracketed between an assessment of need that involves an extensive inventory of a person’s deficiencies and writing an Individualized Service Plan (ISP) that must demonstrate a direct connection between assessed need and specified services and avoid public funding of “wants” or “lifestyle choices”. Without the skillful facilitation of an intentional shift in perspective, a Have-to-plan will be primed by a focus on deficiencies and develop within unconscious boundaries set by judgements of what can realistically be funded.

A Want-to-plan can safeguard a Have-to-plan. A person and those who care can choose to create a space outside the world of disability services for conversation about a person’s identity, gifts and capacities and the circumstances that offer the best life chances. Often, as with Mike, some action will result from this conversation that requires no change in publicly funded services. When the sort of changes in services that require a Have-to-plan are necessary, a person and their allies have a foundation for negotiating what they need from publicly funded services.

____________________________________________________

[1] See for example, NJ Division of Developmental Disabilities (March 2016). Supports Program Policies & Procedures Manual (Version 3.0).

[1] Other agreements might suit other circumstances. A different person might agree to fill the necessary follow up role.

[2] Denigrating graphic records has become a cliche criticism of person-centered planning (“people have colorful pictures on their walls but their lives are unchanged”). Lack of commitment or capacity for creative action seem to me more likely causes of inaction than a vivid record of people’s thinking does.

[3] http://www.opwdd.ny.gov/sites/default/files/documents/PCPChecklist.pdfThe 22nd standard, specific to New York, defines a person-centered planning process as a right and requires written notice of that right. The 23d assures that all relevant attachments are filed with the plan. The rule itself, Medicaid Program; State Plan Home and Community-Based Services, 5-Year Period for Waivers, Provider Payment

Reassignment, and Home and Community-Based Setting Requirements for Community First Choice (Section 1915(k) of the Act) and Home and Community-Based Services (HCBS) Waivers (Section 1915(c) of the Act), was published in the Federal Register on January 16, 2014.

[1] You can view Mike’s witness to growing up in an institution and a snapshot of his life today in this 2015 TV investigation into his state’s continuing operation of institutions: http://www.king5.com/news/local/ investigations/wash-decades-behind-in-serving-developmentally-disabled-1/48265785

 

Home for the Holidays: The Gift of Positive Behavior Support

The holiday season is upon us!

Good food, family gatherings, festive decorations, changing seasonal weather and a break from school may provide you and your family with peace, hope and joy.   If your child struggles with changes in routines, different food items on the menu, overstimulating environments, long periods of unstructured activities or sensory issues that make long pants, socks, gloves, coats and hats feel like shards of glass against their skin, you may not find too much merriment in the coming weeks.

But it doesn’t have to be that way. All behaviors serve a purpose – they are a way for the child to solve a problem. Without the appropriate social skills our kids will do what is necessary to have their needs met in the quickest way possible. However, if we can predict problem behaviors, we can prevent them.

Set your child (and family) up for holiday success by thinking ahead about the types of routines and situations that might be challenging and then craft a plan to prevent problem behaviors or intervene early before they escalate. The first step is to create a best guess statement as a way to better understand the relationship between the behavior and the child’s environment. This summary should include a description of the behavior, what happens before and after the behavior, circumstances that set the stage and what seems to be the purpose.

Here is an example of a best guess statement:

At Grandma’s holiday gathering when someone tells my child to try a food she doesn’t like, tries to force a “please or thank you”, or scold her inappropriate behavior (what happens before), she will cry and yell loudly (a description of the behavior). When she does this, others leave her alone (what happens after). She is more likely to do this when she is tired, hungry or in a new or unpredictable situation (sets the stage). We think she engages in these behaviors to avoid unpleasant people, food or situations (purpose).

To create your own best guess statement, replace the underlined words with descriptions about your child’s behavior and surrounding circumstances. Once you have a good guess about what causes and maintains the behavior under certain circumstances (e.g., crowded or overstimulating environment, being rushed, being told they can’t have or do something they want, different expectations, demands, exhaustion, hunger) you can come up with a plan and potentially avoid a worst case scenario.

When determining the purpose or function of behavior carefully think about what typically happens (what others say or do) after the behavior occurs. Does the child get something or get out of something?  This could include seeking or avoiding attention (from adults or peers), an activity, a tangible (a toy or other object), or sensory stimulation. The behavior may be inappropriate but the reason for it usually is not.  Most of the time there is an obvious reason for misbehavior once we take a few moments to break it down into these different components.

Make a list and check it twice: prevention is key

Many behaviors can be prevented using simple proactive strategies – we underestimate the power of prevention. Using the best guess statement from above, here is an example of a list of some different strategies to prevent or reduce the intensity, frequency or duration of the behavior.

make sure she is well rested and has eaten before going to grandma’s house

bring some food to grandma’s that she likes and would recognize on her plate in case the new food isn’t appealing

extend family expectations (respectful, responsible, safe) to other settings such as Grandma’s – teach what each looks like during difficult activities (e.g., during the gift exchange respectful looks like saying thank you or smiling at the person who gave you the gift).

  • allow her to bring a comfort item (toy, book, blanket)
  • teach a signal she can show to indicate a need to take a break
  • create a social story about family gatherings and review on a regular basis
  • rehearse going to grandmas, practice the specific routines (meal time, opening gifts, playing with cousins)
  • arrive early to allow her to get comfortable before the house gets crowded
  • create a visual schedule of the events – let her cross off as each occurs

Your brainstormed list may look different than this one – but there may be similar themes. Next, select the strategies that are easiest to implement have the highest probability of working. An essential prevention strategy is teaching your child what to do instead of displaying the problem behavior. This other behavior is often referred to as the replacement behavior. The replacement behavior must achieve the same results just as quickly as the problem behavior. For example, if you teach your child a signal to let you know that she needs a break then you must ensure she gets a break as immediately as she would if she were to scream and cry. Responding quickly to the replacement behavior will strengthen it and make the other behavior no longer useful. Teaching involves demonstrating the behavior, providing many opportunities to practice, and letting the child know they did it correctly (the same way you might teach them to ride a bike or learn their colors).

All is calm: intervene early at the first sign of trouble

Be ready to prompt appropriate behavior, redirect, or offer a calming activity as soon as you notice early signs of agitation or frustration. Pre-correction is a strategy to use when you anticipate a problem behavior by prompting what they should do instead. For example, if you notice your child getting frustrated you can say, “remember, you can give me the peace signal if you need a break.” A simple redirect to another activity or topic can decrease chances that the problem behavior will escalate. Handing your child a comfort item or showing empathy can also help alleviate anxiety.

Raise the praise: giving effective positive feedback

Praise expected behavior so your child is encouraged to continue using appropriate behavior. Normally a 5:1 positive to negative ratio is an acceptable rate, however you might want to consider increasing the praise during difficult routines. Provide frequent, genuine, and specific praise. For example, you could say, “you did a nice job sharing that toy with your cousin!”

Do you hear what I hear? Responding to escalating problem behavior

Not all challenging behaviors can be prevented. A child’s ability to control their emotions can often be overestimated by adults. When a child is experiencing significant distress, they are less likely to be able to process what is going on around them — including following what may seem like simple instructions. If, despite your best efforts, the behavior escalates, plan a graceful exit and remove your child from what is causing or maintaining their behavior.  Wait for your child to be calm before addressing the issue. Learn from what worked and didn’t work and adjust your strategies next time.

Believe

What might seem fun and relaxing to adults, could be overwhelming and upsetting to children.  Children are more likely to exhibit the behavior that will most quickly get their needs met, regardless of the social appropriateness. Acting-out is typically a symptom of an underlying issue – it’s important to get to the root of the problem for long-term positive results. Prevention strategies and intervening early can be very effective – yet often underutilized. Think ahead to what can be changed in the environment to eliminate, modify or neutralize anything that might trigger a problem behavior. Support the positive behavior by teaching and reinforcing expected behavior. Ensure consistency and predictability. These small changes can make a big impact this holiday season and beyond.

Resources:

Center on the Social and Emotional Foundations for Early Learning (CSEFEL) Parent Training Modules: http://csefel.vanderbilt.edu/resources/training_parent.html#workbook

Durand, V.M. (2011). Optimistic parenting: Hope and help for you and your challenging child. Baltimore: MD: Paul H. Brookes.