Tag: family support

Emergency Preparation for People with IDD Goes Beyond Having a Go-Bag

Families with individuals who have Intellectual and Developmental Disabilities (IDD) often have plans in place for natural disasters. Wildfires, earthquakes, and flooding are common concerns across Washington. Yet there are other, more mundane emergencies that also need to be planned for. Emergencies happen in almost every home at one time or another. If the emergency is with the individual with a disability, there are often procedures in place with the household as to how to proceed. These include having a go-bag, having a list of diagnosis, medications, and medical history on hand. But emergencies are not also so straightforward, yet it is still possible to prepare for them.

Sometimes the individual with a disability is alone when an emergency occurs, or the caregiver is incapacitated, with only the person with a disability around to help.  Under these stressful situations, many people will panic and be unable to help themselves or others, and those with and IDD are even more likely to react poorly to an emergency situation. One option is to have a personal emergency response system (PERS), sometimes known as medical alert system, for both the individual with an IDD and their main caregivers. This will allow for non-verbal communication with emergency services when the person with an IDD or a caregiver is having a medical emergency.  PERS are available to those on the Community First Choice Medicaid waiver and can otherwise be purchased by anyone.

Preparation is key to heading off potential disasters when emergencies happen. Experts recommend talking regularly to loved ones with IDD about how to deal with an emergency situation.  This can include discussing the importance of listening and following directions of caregivers and first responders. It can also take the form of drills, in the guise of make-believe.  Storytelling can be a wonderfully effective way of getting the message across, and several picture books are available to help children understand how to behave in an emergency.

First responders are increasingly being taught about how to deal with individuals with intellectual and developmental disabilities, but first responders displaying this knowledge cannot be counted on in an emergency. Individuals with IDD are more likely to be comfortable with first responders if they have interacted with them in the past in a comfortable environment.  Community events often have meet-and-greets with police or firefighters, which can be a fun place to introduce children to emergency personnel.  If the individual with a disability is able to regularly visit with first responders, they will be more likely to have a positive reaction to them during an emergency.

Washington State started issuing updated ID cards in 2022, which can now show that an individual has a developmental disability, is deaf or hard of hearing, or has another medical condition.  Not only will first responders be able to see an individual’s important medical information on their ID card, having the card will allow most law enforcement departments to see these designations when they look up individuals in the Department of Licensing system. These new ID cards can help first responders recognize that a person has a disability and act accordingly.

Primary caregivers can enlist the help of nearby friends and family in their emergency planning and can be recruited as an emergency caregiver.  Emergency caregivers need to be someone who is nearby, trustworthy, easily reachable, and has knowledge as to what the person with a disability needs to stay safe and cared for. They can be put on speed dial and the individual with an IDD can be taught how to contact them in emergencies.

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Where to Start: Organizations That Parents and Caregivers can go to for Help and Support

When a new diagnosis is given or a new problem arises, many parents are at a loss for how to start helping their child. Thankfully, there are many organizations in Washington state that are ready to help families in a variety of different specializations. Here are some places to start.

For general parenting concerns, Parenting Trust for Washington Children provides education, advice, and resources for a variety of concerns. Parent Help 123 is able to help caregivers find benefits and services available to them and their families. They run a hotline at 1-800-322-2588. Families of Color Seattle (FOCS) connects families, caregivers, and children of color through peer-led parent support groups.

For families who have children are youth with special needs, the Arc of Washington advocates for the rights and full participation of all people with intellectual and developmental disabilities. Visit the Statewide Parent to Parent (P2P) website to see the local chapters of the Parent-to-Parent program.  The program matches families to those who have been in similar situations, to aid and support them in their journeys.  PAVE provides support, training, information, and resources to empower and give voice to individuals, youth, and families impacted by disabilities through several programs, including Person-Centered Planning, STOMP program for military families, and health information program.  Open Doors for Multicultural Families provides culturally and linguistically relevant information, services, and programming to culturally and linguistically diverse families of persons with developmental and intellectual disabilities. The Washington Autism Alliance (WAA) extends access to healthcare, education and services for people with autism spectrum disorders (ASD’s) and related intellectual and developmental disabilities (IDD) in Washington State.

For families working to get their child a proper education, contact PAVE’s Parent Training and Information (PTI) program, which helps family caregivers, youth, and professionals with questions about services for children and young people with disabilities, especially those concerting special education.

For those with children and youth with behavioral health issues, including mental health and substance abuse problems, the Center Of Parent Excellence (COPE Project), run by A Common Voice, was developed to provide a pathway for Washington State parents who are accessing and navigating the system to have independent peer support to ease their journey. For fathers, Dads M.O.V.E. was created to strengthen the father’s role in raising children with behavioral health needs through education, peer support and advocacy.

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Proposed Rule Will Make More Grandparents and Other Relatives Eligible for Resources to Support Them in Caring for Children Whose Parents Cannot

Yesterday, the Administration for Children and Families (ACF) announced a proposed rule that will make it easier for child welfare agencies to license relatives to foster children whose parents cannot care for them. (Specifically, the rule will allow child welfare agencies to create separate kinship caregiver licensing standards.) This will allow more grandparents and other relative caregivers to access the financial assistance and other resources that are available to licensed foster homes, making it possible for more children to remain with their families during challenging times. ACF is encouraging child welfare agencies to place as few burdens as possible on grandparents and other kin to become licensed, consistent with the safety and well-being of the child.

This rule addresses one of the significant challenges facing grandparents and other relative caregivers, and fulfills a key federal commitment made in the 2022 National Strategy to Support Family Caregivers.

The Children’s Bureau in ACF will hold an information session for title IV-E agencies and the public on Tuesday, February 28 from 3:30 to 4:00 PM ET providing an overview of the Notice of Proposed Rulemaking (NPRM). No advance registration is required. Attendees can join using this Zoom link.

ACF’s announcement is below, and yesterday’s post on their Family Room blog has more information. The proposed rule and instructions for commenting are published in the Federal Register. Comments must be received by April 17, 2023.

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Opportunity for Families: Promoting Equitable Access to Language Services for Families of CYSHCN

Family Voices is recruiting 8 diverse multilingual people to participate in the project advisory committee (PAC) for our new project to Promote Equitable Access to Language Services (PEALS) for families of CYSHCN. The PAC will lead the project by identifying community needs, and reviewing and testing materials to be sure that they work well for English Language Learners.

The PEALS project will improve the quality and use of language access services in the healthcare setting for families with limited English proficiency.

Recruitment Criteria

Eligible participants will be:

  • Diverse youth or family members of CYSHCN with limited English proficiency (LEP) who speak more than one language, (Chinese, Arabic, Spanish etc.) or
  • Allied health workers or health care providers who speak more than one language, (Chinese, Arabic, Spanish etc.) or
  • Community health workers who speak more than one language (Chinese, Arabic, Spanish etc.)

Compensation

  • PAC members receive $300 for each meeting they participate in.

If you are interested in participating, please complete the application form by November 30, 2022.  

The goal of this project is to improve the quality and use of language access services in the health care setting for families with Limited English Proficiency. Family Voices and our partner at the American Academy of Pediatrics will work alongside families with lived experience to develop educational tools and strategies for families, community health workers, and health care providers to improve the way they use language access services.
If this project interests you, please complete the application below to be considered as a member of the Project Advisory Committee (PAC). This committee will help identify community needs and review and test materials to be sure that they work well for English Language Learners.
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Special Education Legal Clinic Registration

To schedule an appointment, go to Special Education Clinic Registration

Interpreter Services Available

The purpose of the clinic is to provide a 30-minute consultation (for those who qualify) with a special education attorney.

The clinic offers free, limited legal advice and referrals for special education issues. The clinic is not meant to be a comprehensive consultation, if you need a more in-depth meeting, please contact WAA for a full intake screening.

Special Education issues related to your student’s Individual Education Plan (IEP) and/or 504 Plan including but not limited to:

  • Child Find
  • Qualifying for services
  • Accommodations and Modifications
  • Behavior supports
  • Discrimination
  • Discipline
  • Harassment, Intimidation, and Bullying
  • Accessing interpretation services

Click here to register for a date on their calendar

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Pediatric Shared Decision-Making: Creating Better Communication for Your Child’s Care

Shared decision-making (SDM) is a set of processes where health care decisions are made through respectful collaboration between doctors, patients, and their parents or guardians. The American Academy of Pediatrics (AAP) and many other medical care groups see SDM as a key part of family-centered care. However, SDM may not be used as often as it should be. There are many reasons for this, such as:

  • Doctors have not learned how to do SDM.
  • There is not enough time.
  • There can be an imbalance of power between the medical care team and the family.
  • There is an existing lack of understanding of what SDM is and how to participate in SDM.

In this month’s Pediatrics, “Pediatric Shared Decision-Making for Simple and Complex Decisions: Findings from a Delphi Panel”, Eaton et al (10.1542/peds.2022-057978) explore the SDM process to look at what SDM is and how it is best implemented.

What did the authors find in the study?
The processes of SDM refer to the activities, in the short and long term, involved in making decisions. For example, an initial process could be to:

  • Establish a relationship with the family
  • Discuss research treatment options
  • Ask if the family understands the clinical issue and the decision that needs to be made.

The main findings of the study show the need to personalize this decision-making process to each family’s unique situation and preferences. Examples of ways to personalize the process can include:

  • Determine information preferences- such as language, amount, type, method and with whom the information is to be shared. For example, how can the information be given in a way that is accessible, useful, and meaningful to the family?
  • Discuss the role of the child and parent/guardian in the SDM process. For example, does the child want to be a part of the process? Are they old enough? Are they mature enough?
  • Explore family values and what matters most to them. For example, is a family willing to discuss these topics with the rest of the care team and/or with the child?
  • Discuss guidance from the medical team about the child’s care. For example, what type of information does the family want from the doctors and nurses providing the care?

The authors introduce a framework that suggests different ways to help with the SDM process. Developed based on learnings from the study, the framework aims to provide a range of strategies to help personalize the process to unique needs of the child, family and clinical situation. The framework provides guidance to be used in all types of decisions, as well as additional guidance for more complex decisions.

The study also highlights areas where the panel did not agree. For example, the panel did not agree on topics such as:

  • Should “personalized” or another word replace “shared” in this process?
  • How do you decide what the child’s role in the process should be?
  • Should a family be asked if they want a recommendation before a doctor gives one?

The full article is available from the American Academy of Pediatrics.

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Enrollment Open for Spring 2022 Online Parent Leadership Training Institute – English and Spanish

The Parent Leadership Training Institute (PLTI) is a free, 12 week, 6 hours per week leadership course for parents, guardians, grandparents, community members and anyone working with families. The goal of the PLTI is to increase community engagement in civic matters, public education and youth development. It is held at Everett Community College in the spring and fall of every calendar year, but is currently offered only online during the COVID-19 pandemic.

The PLTI is led by credentialed facilitators who are certified by the National Parent Leadership Institute (NPLI) after completing intensive training. Facilitators are required to:

  • understand civics and the democratic process;
  • have knowledge about state and community policy issues;
  • embrace diversity;
  • understand the need for parent engagement in the community;
  • see parents/guardians/community members as community assets;
  • be inspiring!

They are accompanied by guest presenters such as business leaders, elected officials, service/health providers, school district officials and guided by a Civic Design Team formed by school and community leaders.

The Children’s Leadership Training Institute (CLTI), a free leadership course for children ages 6 – 12, is offered to the children of those enrolled in the PLTI.

PLTI Curriculum

The PLTI curriculum is an in-depth program centered on the belief that democracy is the bridge linking communities, families, diverse cultures and races. The curriculum is broken down into two sessions which paves a path to a greater understanding of our role in the community and the systems that are in place. It is a catalyst for self-reflection, awareness, analysis and transformation. We believe that everyone can be empowered to improve their lives and the lives of others.

Learn more and Sign Up Here!

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Strengthening Early Learning Transitions

We know that young children do better when they enter preschool or kindergarten feeling welcomed and excited. Families, schools, and early learning programs must work together to provide the best pathway for every child. You can help to strengthen these transitions in Washington by sharing your story with us. We are asking families to think about the following three questions and talk about them with us in a listening session or interview. 1. What are your hopes and dreams for your child as they enter preschool or kindergarten? 2. What are your fears and challenges? 3. What does success look like for your child? Please complete the following information and a Zoom link will be sent to you prior to the event. A $25 gift card will be sent to participants who attend the event.

We know that young children do better when they enter preschool or kindergarten feeling
welcomed and excited. Families, schools, and early learning programs must work together to
provide the best pathway for every child.
 
You can help to strengthen these transitions in Washington by sharing your story with us. We
are asking families to think about the following three questions and talk about them with us in
a listening session or interview.
 
1. What are your hopes and dreams for your child as they enter preschool or
kindergarten?
2. What are your fears and challenges?
3. What does success look like for your child?
Please complete the following information and a Zoom link will be sent to you prior to the event.
A $25 gift card will be sent to participants who attend the event.
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