Tag: family

Census 2020: Submit Your Response to Ensure Schools and Other Programs get Funding

Posted on by Nicol Walsh

The United States Census collects information to figure out how to spend about $1.5 trillion each year. Communities get federal money based on how many people of various ages live there. Money for special education, foster care, children’s health insurance and many other programs is distributed more fairly when the federal government has an accurate count of people living in each community.

The federal government counts citizens only every 10 years, so communities where people are undercounted might not get the money they need for a full decade. According to Count All Kids, the 2010 U.S. Census missed more than 10 percent of children under age 5. Count All Kids provides materials to help families understand why submitting accurate information is important. If a two-year-old isn’t included as a household member, for example, the community will have less money for education, childcare, and other services until that child has a chance to be counted at age 12.

A one-minute YouTube video with Sesame Street characters is a family-friendly way to learn more about Census 2020. For another musical take on why an accurate count is critical, talk show host and comedienne Samantha Bee shared a song about the Census by Baltimore rapper TT The Artist on her stay-home version of the show, Full Frontal.

The National Association for Family, School and Community Engagement (NAFSCE) provides materials to help families understand how to complete their census forms and why their accurate response is important. A recorded webinar from March 30, 2020, is available on YouTube: The 2020 Census and Equity – Why It Matters and How You Can Help.

Minority communities suffer when children aren’t counted

NAFSCE notes that poor and racial minority communities tend to suffer most when families don’t count their children: “Young children had by far the highest net undercount of any age group in the 2010 census. Black and Hispanic children are missed at more than two times the rate of white children.”

Homes received Census forms in the mail this winter/early spring. The questions take about 10 minutes to answer and the responses can be filed online, by phone, or by mailing in a paper form.

In Washington, the Office of Financial Management oversees a Complete Count Committee to help the public access and submit forms to include all members of their family. The state’s website includes a map of legislative districts that are drawn based on Census data and other information about programs that are impacted by the numbers:

“For every 100 households missed in the 2020 Census count, the state could lose up to $5.8 million, which would affect the ability to support children, veterans, senior citizens and middle- and low-income families adequately. An accurate count of Washington’s communities will ensure the fair distribution of taxpayers’ funds and political representation.”

Household information is confidential

On pages that address questions and concerns of families, the Office of Financial Management includes information about confidentiality and privacy protections: 

“The Census Bureau collects data for statistical purposes only. It combines your responses with information from other households or businesses to produce statistics, which never identify your household, any person in your household, or your business. Your information is confidential. By law, the Census Bureau will never identify you individually.

“Title 13 of the U.S. Code protects the confidentiality of all your information and violating this law is a crime with severe penalties. In addition, other federal laws, including the Confidential Statistical Efficiency Act and the Privacy Act, reinforce these protections. The penalty for unlawful disclosure is a fine of up to $250,000 or imprisonment of up to 5 years, or both.”

Beware of scams: Use official forms from snail mail

CensusOutreach.org provides a timeline for 2020 reporting. Families receive notifications by mail and are encouraged to submit response by the end of April. The last day for households to self-respond online, by phone or by mail is July 31, 2020. The Census Bureau will not email or text people for the 2020 Census and encourages people to beware of scams: Do not open or respond to any links sent by email or text that reference the Census. Official forms come through U.S. Mail.

Hard to Count Maps 2020 provides an interactive map that shows how various states are doing in collecting census data and provides state-by-state details about return rates and where to go for further information. If online access is difficult, Washington families can contact the state Office of Financial Management by phone for more information: 360-902-0584.

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

Posted on by Nicol Walsh

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

Relatives Raising Children Face Unique Challenges

Posted on by Nicol Walsh

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

Posted on by Nicol Walsh

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

 

What Will Happen When We’re Gone? Planning for the Future for Your Child with Disabilities

Posted on by Nicol Walsh

Decide What You Want

Thinking about what will happen to your child once you die, or are too ill to care for him or her, can be scary and raise your anxiety level. One technique is to think about what you don’t want for your child – for example, “I don’t want my son to have to live with my sister – she has three children of her own, it would be too much” or “We don’t want our daughter to have to leave our home and neighborhood”.

Do a reality check on your “don’t want” list—if your child is a minor, they may not be able to stay in the family home without an adult. Think about how they might be able to at least stay in their school, around their friends, and keep getting services from their usual providers. You may come up with more than one option, and that’s okay. An estate plan, including your will, can be flexible.

This is the most important part of the estate planning process. You will need legal documents to make sure your wishes are carried out, but making these decisions now is important. Remember, wills and other legal documents can be revisited as your child grows up and if family circumstances change.

Gather Information for Reference and Legal Documents

Gather information in four categories: Personal, Medical, Financial, and Legal Documents. There is an excellent list of what documents and information to include in an article from the Special Needs Alliance. (Click on this text to read about Estate plans)

The recommended list may seem too big to tackle, so take it one step at a time. Have a family member help and remember to keep all the information available, but safe! Some secure, easily accessible options are a locked fireproof safe, a safety deposit box (make sure someone in addition to you has access), or a password-protected computer with a cloud backup.

You Need a Will

The will contains (almost) all your instructions for how you want your child to be taken care of when you die (see Letter of Intent later in this article). Your child will need a guardian or guardianship alternative while they are a minor, and for their lifetime if you expect they will be unable to fully care for/support themselves.

If you die without a will, or if you don’t specify a guardian, a court will appoint a guardian – and it won’t necessarily be a family member. It could be someone who may be a complete stranger to your child.

When selecting a guardian, remember that you don’t need the same individual to manage your child’s finances AND personally take care of them. In fact, it’s usually not recommended for them to be that same person – we will talk more about that later in this article. Some estate planners also encourage parents to think outside the family box when naming a guardian. Think about close friends as well as your parents or siblings. If your child is older, think about adults with whom your child has a bond. This can help if you want your child to continue in their current school, job, or neighborhood.

Something we were not aware of before we researched for this article – you need to list each of your children individually when naming their guardian, even if all your children will have the same guardian. The probate court will not assume that you meant the same guardian for any children you don’t list and they could appoint a separate guardian for each of the unlisted children!

Make plans for your own future needs and for your other children. Think about who will handle what if you become incapacitated. Will you need someone to manage your finances? Make decisions about your healthcare and living arrangements? Powers of attorney and advanced healthcare directives will mean that your children and other relatives have clear directions about your needs and your wishes.

Your Child with Disabilities and Your Will…

Don’t leave your child with disabilities any money in your wills, but don’t disinherit your child either. Let us explain…

Individuals with disabilities frequently qualify for government benefits such as Medicaid, which can be essential for services and/or healthcare. Government benefits require that beneficiaries have very limited assets – a few thousand dollars at most. Inheriting money above that limit will mean that your child will become ineligible for benefits including needed services. To become eligible again, your loved one would have to spend all the inherited money on the services and benefits they no longer qualify for plus everyday expenses until the limit is reached. Then they have to reapply!

If you disinherit your child with disabilities and give the money to a family member to support your child (even if you named that person your child’s guardian), this can place a large legal burden on the family member or guardian. It also doesn’t guarantee that your child will get their needs met.

What to do instead of leaving money in your will or disinheriting your child:

Set up a Special Needs Trust, or SNT.  A trust is a legal “entity” in which assets can be placed. Trusts have a beneficiary – someone for whose benefit the trust was created- and are managed by individuals called “trustees.” Trustees can be professionals (bankers, trust company managers, attorneys), private individuals, or any combination of the two.

A SNT is a type of trust specifically designed so that beneficiaries with disabilities can get government benefits/services and still receive income to increase their quality of life. Government benefits will cover most of the basics (“needs”), monies from the trust can pay for the “wants”.  Income from a Special Needs Trust is not counted as an asset or income for purposes of most government benefit programs, but setting up the trust should only be done by a qualified attorney. If it is done incorrectly, your child’s benefits could still be at risk. You can get a recommendation or referral from your state bar association (http://shop.americanbar.org/ebus/ABAGroups/DivisionforBarServices/BarAssociationDirectories/StateLocalBarAssociations.aspx

You can arrange for the Special Needs Trust to be the beneficiary for life insurance policies and retirement plans. You can let friends and relatives know that they can give or leave money/assets to your child through the trust.). Think ahead: trustees may need to manage the trust for decades.

Letter of intent: This is a document expressing your wishes for your child.  It has no legal standing, but acts as a guide for your child’s guardians and trustees.  Do you want your child to be able to visit their grandmother and travel by air? Get a therapy not covered by Medicare or other insurance? Go to Disneyworld at least once? Take swimming lessons? Own a dog?  This is where you put those wishes. The co-trustees can figure out how to make it happen, if the trust income covers the cost.

You should also include your wishes for your child’s daily lives – school, work opportunities, living arrangements in addition to what is covered in your will.

The trustees will take your letter of intent very seriously. It is important to understand, however, that their legal duty is to your child, who is the trust’s beneficiary. If they believe that your child’s best interests are served by doing something different than you write in the letter of intent, that’s what will happen. This is why co-trustees are a good idea – one with a professional viewpoint and one with a personal viewpoint.

Special Needs Trusts for Military Families

Military members have the option to direct payment of a Survivor Benefit Plan (SBP) Annuity for their dependent child to a Special Needs Trust (SNT). There are differences between Special Needs Trusts funded by a military Survivor Benefit Plan and the civilian-funded plans discussed above. You can find out details about the differences, and how to set up this type of trust, in this article by the Military Parent Technical Assistance Center. (Click on this text to read more about the latest news on military special needs info

My Child, the Athlete: Coaching a Child with Hidden Disabilities

Posted on by Nicol Walsh

Over 30 million youth between the ages of 5-18 participate in youth sports every year.

Some of the most common hidden disabilities are Specific Learning Disabilities, Speech and Language, Attention Deficit Hyperactivity Disorder, and Autism Spectrum Disorder. Athletes with these disabilities can experience similar difficulties in understanding and developing a specific skill such as understanding a play for football or a routine for cheerleading/dance as they do in the classroom. Many coaches will have the opportunity to coach a child with one or more of these disabilities but will have no idea of the characteristics and learning strategies that are best suited for the child.

Tips to successful inclusion of athletes with hidden disabilities:

Routine is important, create an atmosphere where there is consistency. Conduct practices on the same days each week and begin and end practice at the same time.

To promote inclusion offer different skill levels during practice to help the development of each athlete (entry level, intermediate level, expert level).

Provide clear instructions/directions with an overview of how practice will occur.

The use of gestures and physical demonstration should accompany verbal instruction. Repeat and clarify instructions as needed. For example, when showing a football player how to hold a football, cue the athlete to hold one end of the ball in the bicep of the arm and the first two fingers hold the other end of the ball.

Break the specific skill into steps. For example, when teaching a basketball lay-up, first practice the dribble to the basket, second practice jumping off one foot with the basketball, and then practice shooting into the basket. Combine all three skills when the athlete is showing they are able to complete each skill.

Positive reinforcement is encouraged to keep athletes on tasks. Allow the athlete to earn a leadership role such as captain or co-captain.

Prevent challenging behaviors by redirecting the behavior. For example, if an athlete is interrupting or talking at the same time as the coach, have the athlete to help with the demonstration. This also encourages self-control.

Sports experiences can either have a positive or negative effect on a child. The interactions that a child has with their coach and teammates can affect their self-esteem. Creating a supportive environment that is respectful, inclusive, and celebrates the athlete’s development can enhance the child’s confidence and social skills.

 

What is Person Centered Planning?

Posted on by Nicol Walsh

What it is?

Person Centered Planning is a process focused on celebrating the gifts, talents, and dreams of a person, and on helping that person develop action steps to move closer to their dreams and goals. It involves 4-5 gatherings, usually in the person’s home, where friends, family, and others chosen by the family, brainstorm together about how to enrich the life of the person with special needs.

Gatherings are facilitated by people who listen, ask questions and draw pictures
and words that represent the desires of the focus person.

What makes it special?

Person Centered Planning is deeply personal. It is done specifically to listen to a person’s feelings and goals without judgment. It is done in a sensitive way that truly honors who that person is; Person Centered Planning explores all life domains, and future dreams. It is done to empower a person and his or her family to develop action steps that will support that focus person, and enrich his or her relationships.

How you can find out more about person-centered planning?

Workshops are sponsored yearly by Parent to Parent and local school districts. Anyone is welcome to attend. At the workshops, young people and adults who have experienced Person Centered Planning share their experiences about how Person Centered Planning has affected their lives.

A Sibling Perspective

Posted on by Nicol Walsh

When I was younger I never noticed anything wrong with my brother.

Sure, he was very hyper at times and I do remember taking him to speech therapy with my mom but nothing crossed my mind. I never realized my brother was different. One day at school, I was about 9 and my brother was 12, we were waiting in line outside of the lunchroom to go inside and eat breakfast. Nothing seemed wrong or out of the ordinary, until a group of kids in my brother’s grade walked over to us. They all surrounded us. Suddenly, they looked at my brother and the leader of the pack suddenly called him a “creep”. The group around us laughed. The same boy then started to call my brother other crude names. My brother looked puzzled and just kept saying “stop” but no one listened.

I then had enough of this name calling game. I stepped in front of my brother and said, “Stop calling him those names. He is not what any of you say at all. Leave my brother alone.” After I said that I wished I hadn’t, but somehow, I knew what I was saying was right. Who am I? I was just a 9-year-old little girl. I had no knowledge of people with disabilities at all. I didn’t even know what “creep” or any of those other words meant, I just had that gut feeling in my heart that something wasn’t right and I knew I had to stick up for my brother at that very moment.

My brother picks on me like a normal brother is supposed to do, and sometimes he takes it way too far. Occasionally I do reply, not very nicely, but after I say something back I feel bad. I promise myself I will try harder next time to remember that yes, he does seem ok at times but he still has autism. I love my brother. I wouldn’t ask for any other sibling in my life. He has helped me and supported me at times too. He always knows when something is wrong and he always asks if I am ok.

So, what’s my perspective on having a sibling with a disability? Well, it’s not very simple you see, sometimes I do wish he was normal and understood everything correctly, but then again, I don’t. Having a brother with autism has taught me many things. No one is perfect, normal is fiction, don’t ever underestimate someone’s abilities, be a leader not a follower, learn from mistakes, and the most gifted are the least expected. My brother is actually a very talented person. I like to think of him as a sculptor. I remember when he was little he would make little men with weapons and tanks out of silly putty, gum wrappers, and Nerds boxes. Every once in a while, I still give him my extra Nerds boxes or gum wrappers because I know he really likes making new little men. He’s also very good at voice impressions; he makes me laugh every time he does one.

My brother makes me laugh in general.  Yes, it is hard to explain to everyone how my life with a sibling with a disability is but let me tell you something, he is one of those people that you could not forget. My brother is not normal but neither am I. I am not afraid anymore of being me, and yes, I am a very weird person but hey, at least I am me and so is my brother. I look up to my brother because he’s not afraid of being himself.

 

Positive Behavior Supports: Continuing the model at home and in the community

Posted on by Nicol Walsh

By: Dr. Vanessa Tucker, PhD., BCBA-D

What is Positive Behavior Support?

Positive Behavior Support (PBS) is a special education initiative that informs school districts, schools and classrooms regarding prevention and intervention practices designed to teach and reinforce pro-social behaviors. Behavior supports, as we parents well know, do not end at the schoolhouse door. Interfering behaviors can and do continue to manifest themselves in other settings and present a real and present challenge to parents and caregivers raising children with special needs.

The field of PBS is built on the premise of universal interventions that are designed to teach behaviors that prevent negative or challenging ones from occurring. These universal interventions, or Tier I, are effective for most children, but approximately 15 to 20% will need something much more intense in order to experience success. These children require what are known as Tier II and Tier III Interventions. Tier II interventions are designed to address the 15% who need more focused interventions. These may be temporary or may be needed on an ongoing basis. A small number of children (approximately 5%) will require intensive interventions, or Tier III, designed to support the most challenging behaviors. As a parent, you may find that problematic behaviors are a top priority for you due to your child’s unique needs. Parents can benefit from applying the same basic system of PBS in the home and community in order to mitigate the presence of interfering behaviors as well as teaching and reinforcing acceptable replacements. The focus of this brief article will be on prevention tactics that parents and caregivers can implement in the home and community.

Prevention as Intervention

Challenging or interfering behaviors occur for a wide variety of reasons. In many cases a communication breakdown is the “culprit.” In other words, children who have communication delays often resort to behaviors we don’t want in order to let us know what they do want! Children may also engage in challenging behavior due to stress, fatigue, unmet needs for attention, or because they have learned a habit that “works” for them. For example, the child may engage in mild to moderate aggression toward a parent when they first arrive at home as a means of accessing attention. This is problematic as the child inevitably is reinforced for these behaviors when the parent provides the designed attention. The first order of business in PBS is to teach and reinforce behaviors and/or to change our own practices as a means of prevention. In addition, it is strongly recommended that you work with your school team and utilize the Functional Behavior Assessment (FBA) and Positive Behavior Intervention Plan (PBIP) to guide your interventions at home. Pay close attention to the described “function” or reason(s) why your child engages in challenging behaviors. You’ll want to plan your interventions based upon those hypothesized functions. For example, if your child’s aggression is due to escape from unwanted tasks, you’ll want to find ways to help him escape (e.g. ask for a break) successfully. Remember that whatever you select as an intervention should be acceptable to you and your family.

In order to be efficient, you will want to analyze the various times, areas and places where challenging behaviors are most likely to occur. Create a simple matrix of your activities and rate your child’s behaviors as (a) non-problematic, (b) somewhat problematic, or (c) very problematic. Target those areas that are “very problematic” first. Decide what could be creating or maintaining the problematic behavior. Is your child in need of communication supports? Does he understand what is expected of him? Does she need more visuals in order to do what you want? Is her need for attention being met in ways that are unacceptable? Are there sibling issues? Tackling the most difficult areas first will bolster your ability to dive into the smaller issues later and may actually address them inadvertently through your interventions with the bigger ones.

The following table (Table 1.0) presents a list of general recommendations and justifications for prevention of challenging behaviors at home or in the community.

Table 1.0 Tactics for Prevention of Challenging Behaviors

Tactic Rationale Example
Non-Contingent Reinforcement/Planned Attention Your child may need your attention and will engage in whatever behavior necessary to obtain it. You want your child to obtain your attention without having to engage in mild to moderate behaviors to receive it. When you come home spend the first 10 or so minutes with your child before you check email, answer the phone or do anything else. Plan this and stick with it. Give your child (or children) your undivided attention before you do anything else.
Schedules-Visuals and/or Written Your child may need the same structural supports that they use in the school setting in order to predict what is coming, what is done, and what is expected of them. They may not be able to predict these things as successfully if given with verbal prompts only. Create and use schedules with visuals or words for family routines. This might include an activity schedule for evening activities, for a bathing routine or a trip to the store. Rely on your school staff for support in this area. They can assist you to build and use these systems.
Transition Schedules and Objects Your child may need more information than you require in order to successfully understand and navigate transitions. You may need to provide him with more information about what is coming and what will happen. Challenging behaviors may result from a breakdown in understanding what is coming or what is expected. Create a transition schedule such as a white board with icons and/or line drawings. Some children benefit from a basic checklist that they can “check off” as they go. Others need a transition object (e.g. a teddy bear, or something else that is comforting) in order to successfully navigate transitions.
Demand-free time after school All children are tired to some degree or another after school. For some children, the social demands of school have left them with very little in the “tank” at the end of the day. Behaviors may occur because the child needs rest from social and other demands. Consider providing 30 minutes or more of demand-free time (e.g. no homework) after school. Pair this with a timer and allow the child to engage in something that is soothing, restful and relaxing. Don’t pair this with their favorite and most reinforcing activity-save that for after they complete what you want later in the evening, especially if that involves homework or chores. Engage them in a schedule with demands (homework and chores, etc.) after a period of rest.
Homework and Chores A child may balk at the idea of homework and/or chores, which are regular expectations of most parents after school. You may find that children engage in a lot of challenging behavior around these two areas. Consider the rest time after school as the first line of defense. Then, consider using a visual system that breaks down what they have to do, how long they have to do it, and when they are finished. Break things into smaller pieces (called “chunking”) and consider pairing with breaks in between each piece. Show visuals of what you expect the finished product to be. For example, what does a clean bathroom look like? Show each part in a picture format.
Token System Your child may not be particularly motivated to engage in things that are outside of his/her interest area. Challenging behaviors may occur despite your efforts to provide visual structure and break things into smaller pieces. She may need a more tangible way to motivate her to comply with what you want. Consider adding in a token system designed to provide reinforcement for desired behaviors. If possible, mirror the ones used at school if they are effective in motivating the child to comply. Creating a “First, then” procedure allows the child to see that after they do what you want, they will get something that they want. For example, “first clean bathroom, then 20 minutes of iPad” is a reasonable expectation. Provide tokens (stickers on a chart, poker chips on a velcro board) for each step of the bathroom clean up. Make sure you follow through with the earned reinforcer once they’ve complied.

Summary

Challenging behaviors in the home and community are never easy for parents or caregivers to address. Working with your school team, you can come up with ways to support your child so that they understand what you want and have the tools to engage in replacement behaviors that are acceptable to everyone. Many children with disabilities benefit from the same basic principles of PBS that are used in schools. A focus on prevention can decrease stress, increase compliance and teach replacements that lead to better behavior in all settings.

Person Centered Planning and Aging Families

Posted on by Nicol Walsh

At the age of 56, a single parent from the baby boom age, my youngest son is now 26, and at this time in my life I need to plan for my retirement.

In a few years I will be heading toward the twilight of my life, so I need to take into account how that affects the life of my son, Kyle, who experiences Down Syndrome. Just like many families who live with and care for their adult sons and daughters for most of their life, it is my responsibility to share vital information that I might be the only one who knows, such as how, what, when, and where services are to be received. This way all the hard planning that has made his routine and the quality of life possible can continue even when I’m no longer able to care for him or myself as I age.

Up to this point most families don’t plan for such events, thinking that they will outlive their loved one with a developmental disability, brushing aside thoughts of what the future might hold for them. If I don’t think about it won’t happen. So usually what happens is when the parent or care giver has a medical emergency there is no plan of care or support for themselves or for their adult son or daughter with a disability, leaving both in need of a plan of care. It will be important to identify who it is left to sort through the maze of services, or lack of services, to help during this very vulnerable time.

Person Centered Planning is a tool that is used to help people plan for the future. Just as you plan along awaited trip you use a simple guide to help you make the journey comfortable to enjoy your precious time you have set aside. When it is time to plan, bring together the people who will be in the family’s life at that critical time. Usually, it is left up to siblings who have not been very involved in their sibling’s day-to-day care. Their parents did a really good job of caring for their sibling, but most find out the hard way what the daily routine looks like for their sibling.

By using the Person Centered Planning method, you have a document on hand so that you are able to have input into a plan of care before a crises.

Aging parents must start thinking about drafting a will and learning about trusts for your peace of mind. Think about the use of Person Centered Planning as a tool, as it can help relay your wishes and concerns. Share information about their care, like who their doctors are, what their care plan is, and other things like a living will. This is in case the parent loses their ability to share vital information to the people who care and to service providers who need to plan action steps.  What history of care has been provided, what are the needs, who can help, what is the plan of care when you or I are not able to communicate the needs of our adult sons and daughters?  As we age, the plan becomes the family plan, not just for the individual but for the whole family, including the network of support and those who will be left to sort things out.

The process helps pull together all their important information so that people who come in and out of the person’s life have something with which to help plan a positive quietly of life for the  individual and their family.

Pierce County Parent to Parent has also put together a care notebook that helps families keep important information together for when the parent is no longer able to speak for themselves or share information that is important, not just for the individual with the disability, but for the family itself.

Reunited photo courtesy Jenn Durfey via flickr

Surviving Parenthood

Posted on by Nicol Walsh

A parent received a call from her son’s middle school art teacher.

He asked if she could drop by after school to discuss her child’s art project.  Thinking that her “darling” might have finally shown some artistic ability she arrived at the classroom expecting that he might have won a prize or was going to be nominated for an award.

The art teacher produced a large piece of pottery that resembled a bowl with a stem, something Sherlock Holmes might have used.

This parent was confused—it didn’t look like anything that would win a prize. Ever the supportive mother, she was willing to be “proud” until she was told by the teacher that he was pretty certain it was an attempt to make paraphernalia that was not allowed at school.  Apparently, this misguided little artist wasn’t the first to try this and probably would not be the last.

The parent was sent home with the object.  Rest assured, the object caused major communication between that student and his parents.  The piece of art sits carefully tucked away, unused.

 

Preparing for the Special Holiday Season!

Posted on by Nicol Walsh

It’s the most wonderful time of the year, that is, until…

Your son or daughter doesn’t feel like being hugged by their grandparents or relatives and has a meltdown. Or until your child gets overwhelmed with all the new people, sounds, aromas, around him or her. Or until he or she is out of his or her daily routine. So we asked, “What can we do to make the holidays as has happy as possible for our children?” We talked with parents about things that have made it possible for them to prepare to have a safe and happy holiday.

These are some of the things they shared with us:

Routines/Schedule events –

Use Google apps to share activities you plan with your kids. There are many applications (if you want to go that route) that can help kids know what is going to happen during the day. For those of us that are less technical, a calendar will do just as well.  Using something visual to show children what activities will happen during this period of time may help diminish the lack of control some children feel when moving from one activity to the next.

Make these teachable moments. For example, if activities happen outside, you can ask your child to make a list of the things he or she will need.

One of the things I hear from parents of children that don’t like their routines changed, is to try to keep their night time routine, especially bedtime, as unchanged as possible.

Expectations – This is a biggie, especially for those of us that want to do what our parents used to do when we were little or are chasing that perfect the Norman Rockwell-esque Christmas picture.

We need to make sure we are realistic about what we can do and how much we can do. Some of us would love to have a real tree in our homes, but just the introduction of a new fragrance may be too much for some of our kids.

Then there are family expectations, know what is flexible and what is a deal breaker, and talk it over with your spouse or partner. There may be a time when you need them to back you up (or even take the lead) in cancelling plans that you had with your relatives.  Let your partner know where you will need support, what kind of support your need, and likewise, where they need your support and on what occasions.

Suggested gift lists – One of the worst feelings in the world is to watch your little one open a toy that you know they will not be able to play with. Having said that, even worse is when you see your child struggle to open a gift and try to put it together when you know they cannot do it. So, how can you prevent this from happening?

Well, be honest. Be honest with yourself, your friends, and your relatives. Make a list of the things your kids would like and share it with those who have asked.

Consult catalogs, therapists, teachers, and even the Differently-Abled Toy Guide from Toys R Us  to find things you may be able to suggest for your kid.

Pre-prepare for gift opening – Just like before, preparation is key.

I heard from a mom who said that she would open the gifts she was going to give to her child with Cerebral Palsy so she would not have to fidget with trying to open the box and put the toy together. She and her husband would preassemble all the gifts so that her girl could just go right into enjoying the gift. She shared that it also helped to make sure they had batteries for the toys.

Another mom said that Christmas lasted for two days in her house because her child did not want to open the presents, so the family took their time and opened one gift at a time, taking pictures and enjoying the extended gift opening.

Mother helper/Santa’s Elf – A mom we talked to shared that she hired a mother’s helper to be with her son at any activity she had at her home. This person would be there to pay attention to her son, make sure he had food, was comfortable, and that he had the things he needed while they had company.

Escape plan– Some of our kids can handle crowds and gatherings for a little bit of time, others for a longer time. You could think about giving them a code word or a code card that they can give you when they feel that they are becoming overwhelmed with the people or activities that are around them. Assure them that you will respond right away. This can help reduce their anxiety and give them some control over the situation.

Tell your story – “About my kids with special needs that will visit your home.” Most of us would not go where our kids are not welcomed or to a place that is new for them. However, this might happen during the holidays when we visit relatives our children hardly ever see and vice versa.

This may be a good time to introduce this family to your child and the disability that affects them, how it makes them different and yet the same as other children.

Garner their support so you can all enjoy the company and the time together without having to walk on eggshells.

Elopers and escapers – One of the moms we talked to is always concerned with making sure the host is aware that her girl with Down syndrome loves to escape. “They are really faster than you know, especially when we combine grownups and kids, they can slip through the cracks.”

She always packs a couple of stair gates and door knob locks to help.

In addition, she said she always put a ribbon on her daughter that has jingle bells to make it easier for her to hear her.

Clothes – Many parents share that their children have their preferred colors, fabrics, and smells, so why would this be different around the holidays? Not all clothes are made the same and our children can feel it.

A parent we talked with said that she brings several outfits (tops) for her son to choose and then she brings the pants. This way they become part of his collection for the holidays. She lets him wear them so he can get the feel for them before she wants him to wear them. “It actually worked well last year, so we are planning on doing it again.

There was one time where he did not want to wear any of them so we didn’t even make a fuss over it.” She reminded me: “Stick with what works, those little nuances are important to our kids. Nobody else has to understand, just you and your spouse.”

Menu – Does the child need to follow any diet restrictions?

We should never expect the host or hostess to know these things.

A mother we talked with said she always calls beforehand and lets them know that her child is on a special diet and that she will be bringing food for his special diet.

Another place where you can share the dietary requirements for your little one with the host or relatives is during your story

Bring supplies –

Most parents I know carry a “Mary Poppins” bag. They can pull anything they need at the right moment in any place they are. That shouldn’t change during the holidays, especially when we are far away from our children’s comfort zone and they are not surrounded by things that are familiar to them.

This may be the time when we carry extra clothes, extra head phones, ear plugs, a special blanket, a special toy, batteries, snacks, wet wipes; anything we may think will enable our children to feel comfortable in their new environment.

Don’t overbook – Sometimes this is easier said than done. We all have commitments that we have to comply with due to work, family, school, etc.

The key is to do what you can. Understand, people want to celebrate the friendship they have with you and your family.

One busy family we talked with said they host an open house for their kids’ friends and they do it early in the season so they can have family time the rest of the holiday time. They invite all of their kids’ friends and parents for cookies and milk/cocoa and they play games and sing carols. Everyone brings a gift that is donated to a toy drive and everyone leaves with a bag of cookies to go home and some “Reindeer food” for their own home. (See below)

Check for manners – In most homes children both big and small are expected to act in a certain way.

Why not have a quick family meeting before you leave for any activity and review what expectations you have for everyone’s behavior. You can remind them gently to use their ‘Please, Thank you,” and the way in which they address adults.

Make sure they know what is a deal breaker. This may even benefit your neuro-typical kids as well.

However you celebrate this holiday season, we wish that your holiday is merry and your New Year is bright, filled with love, health and joy.  We would love to hear if you used any of the suggestions we shared and how they worked! We are here for you and your family.

Share your story with us at www.Facebook.com/PAVE.wa