Tag: planning

Do You Have an Emergency Respite Plan?

Posted on by Barb Koumjian

Who will care for your family member if you are temporarily incapacitated? Don’t wait for an emergency situation to occur to think about who will take care of your loved ones.  Finding someone to take care of your children, grandchildren, or elderly relatives on short notice takes time and information, so plan ahead.

In this article:

  • 4-step process to set up a backup plan for “emergency respite” when you will need other people to provide care to your loved one when you suddenly can’t
  • Examples of forms and documents you can use to make plan set-up easier
  • Where you may find paid respite providers
  • Where you may connect with potential unpaid respite providers in similar circumstances
  • Potential financial resources to pay for emergency respite care

4 Steps to create an emergency respite plan and put it into action

Step 1) Get it down on paper:

  • List the people you care for; with the hours you care for them and what care you provide (for example, monitoring medication, bathing, shopping, etc.). Note where the care is provided (they live with you, they live in their own home, etc.)
  • List the people you know that are capable and willing to care for the individuals for whom you care. If the list is short, create a list of those who you think may be able to provide care.
  • Recognize that if you have several people for whom you care that you may not be able to use the same caregiver for all of them. Also recognize that if you ask someone to be an emergency caregiver, that that person might expect that the agreement is reciprocal – they may expect that the people that they care for will be taken care of by you, should it be needed.
  • Be aware that if you hope to use a facility, such as a nursing home, it will be extremely difficult to find space in a facility at short notice. Such organizations can’t guarantee if or when a bed will be available even with advance notice.

Forms and resources to help you make these lists:

  • You can certainly just use your own outline of your loved one’s care needs and routines, and medical information, but below are several free documents designed for children’s care.
  • For others, there are numerous printables or notebooks available via an internet search, including many found on Etsy and Amazon and even local drugstores!
  • Try a search for “hardcopy medical information form”, “hardcopy medical information planner”, “caregiver daily record”, “senior care checklist”.
  • Portable Medical Summary is for vital information to carry around with you at all times.
  • Getting to Know Me is a short form that children can carry with them that is also available in Spanish.
  • What’s the Plan? Includes In Case of Emergency, and Getting to Know Me

Step 2) Have an open and honest discussion with the people on your list:

  • Are they willing to provide emergency respite if needed? 
  • Are there time limitations on what they can provide?
  • Are there questions they need answered before they commit? 
  • Who will be the primary caregiver, who will be the backup caregivers, and who will be the main contact person and coordinator?
  • You can reassure potential temporary caregivers that you’ll have complete information about the person’s care needs, medications and how to give them, medical contacts, and how you can be contacted while you are not able to do caregiving
  • If there are few or no people who you can depend on for emergency respite, start researching to find if there are paid caregivers you can use, or possible unpaid caregivers with whom you don’t yet have a strong relationship. Note that paid caregivers will need some lead time to schedule services, so they are not for a last-minute call.
  • It’s a good idea to have at least some strong possibilities for emergency respite care before you follow Step 3, discussing the plan with the person you care for

Step 3) Have a discussion with the person you care for about the emergency respite plan and the emergency caregivers

  • It’s crucial that their opinions are part of your plan process, and they are comfortable with the plan so that any switch in caregiving goes as smoothly as possible.
  • If you care for people who take time or repetition to process and accept change, it’s important to begin the process of why, when, who, and what so the transition to a new person or people is easier.
  • When possible, the people you care for may add their request to a potential emergency caregiver to yours. They may also suggest potential caregivers you haven’t thought of!
  • Realize that you may have to revisit Step 3 as you try to firm up your plan, or when the plan needs changes.

Step 4) Get the complete plan on paper and share it with your emergency caregivers and the people they will care for.

  • Take the document you began in Step 1 with information about your loved one’s needs, healthcare, likes and dislikes, and routines.
  • Add contact information for your emergency caregivers, with brief information on who will be the primary caregiver, who will be the backup caregivers, and who will be the main contact person and coordinator.
  • Carry a copy of this information with you and give it to your emergency contact, along with the people who you are likely to tap as emergency respite caregivers.
  • Important: Post a copy of the plan in your home, in a prominent place where first responders will find it (refrigerator in kitchen, next to a landline phone are both good places).
  • If you care for people who live in their own homes, ask them if you can post it there as well, with their permission. Explain that it’s important for everyone to know who will be taking over if you need to pause in your caregiving.

Medical and other social workers and those intimately acquainted with the needs of your family can be helpful in the process if you get stuck.

Possible unpaid caregivers: Reach out for connections and relationships that may help you in an emergency.

  • Often parents who have children with similar diagnoses can come to an understanding where they will take care of each other’s children in an emergency situation. One good place to find these connections is through the Parent to Parent (P2P) programs across WA State. Find contact listings in the P2P program pages at The Arc Washington State.
  • If you care for a child or young adult with complex medical needs or a specific condition, you can find support groups and contact information on the website of Washington’s Family to Family Health Information Center.  You can also use the Get Help link on that site, or at PAVE, to ask about support or “affinity groups” (affinity groups are for family caregivers/parents whose loved ones have similar conditions or other things in common).
  • If the person you care for has a specific medical condition, such as dementia, Parkinson’s Disease, or Traumatic Brain Injury, try an internet search for local chapters of organizations which support people with those conditions.
  • Do you have a faith community (mosque, church, synagogue, temple, etc.) that might be able to put together some volunteer care?
  • Are you caring for the child or children of another family member or friend? Whether or not you have official guardianship, you can reach out to the Kinship Navigators in your county or area of Washington State. These professionals can offer support and referrals to caregiving organizations and individual providers, and potential ways to afford care.

Regional and County-level programs may help to locate paid caregivers and possible financial assistance to pay them:

  • For any county: type the name of the county and then .gov (example: Snohomish County.gov) to get your county’s official website.

General information on where to get respite (planned breaks from caregiving) across WA State: Respite Offers a Break for Caregivers and Those They Support -information on different sources of respite care in WA State, many of which cover some or all of the cost of care.

To find paid caregivers, you can:

  • search for qualified paid caregivers through the Lifespan Respite provider database
  • If you are in King County, try Carina.org to search for an agency or individual provider
  • your local Area Agency on Ageing serves caregivers of seniors and people of ANY age with disabilities). Search by your county to find contact information for local services.
Area Agencies on Aging phone numbersDownload

State agencies to help you find paid caregivers and funding for paid care: With hundreds of different caregiving companies and nonprofits around the state, it is not possible to list them all. There are several agencies that have full listings of caregiving providers. Statewide, you can contact Community Living Connections at 855-567-0252, and Eldercare Locator at 800-677-1116

Tips to Organize Your Child’s Medical and School Documents

Posted on by Nicol Walsh

A Brief Overview

  • Keeping track of important documents for your child’s health can save you time and give you less stress.
  • Take advantage of technology! If you choose to build a digital storage system, integrating it with your smart phone will make it easy to share information on-the-go with doctors, day care providers, school staff, and other professionals.
  • Plan a grab-and-go handout, notebook, or phone app to make it easy to find and share critical information during an emergency.
  • Read on for information about how to get started!

Full Article

Care planning and a well-organized system to keep track of important documents can save time and create comfort during uncertain times. This article provides some tips for building a “care notebook,” which might be a three-ring binder, an accordion file, or a portable file box—whatever makes sense for your organizational style and the types of materials you need to sort.

A portable Care Notebook can include the most current versions of medical and/or school documents, while older files can be archived separately. Here are some examples of formal documents you might organize:

  • Medical paperwork: diagnoses, assessments, surgeries, medications, provider contacts
  • School paperwork:  Individualized Education Program (IEP), Section 504 Plan, assessments, meeting notifications, progress notes, correspondence, telephone logs
  • Personal care notes: hygiene routines and concerns, food preferences and issues, sleep schedules and challenges
  • Community access: transportation needs, hobbies, clubs, activities

Click to print out the infographic above

Consider what else to include, such as business cards and contacts, a call log, a calendar, emergency/crisis instructions, prescription information, history, school schedule…

Each primary category can be a section of a large notebook or its own notebook. Consider how portable the notebook needs to be and where you might take it or share it. Will the size and shape be practical for where you plan to go? Do you need more than one notebook or system?

One way to make the most current medical information more mobile is to use an app on your phone or tablet. Here are two options:

  • Specifically for an iPad or iPhone and available through Apple, My Health Tracker was developed through Boston Children’s Hospital and Boston University.
  • Available for android phones through Google Play, MyCookChildren’s provides categories and ways to take pictures of documents and/or store information that you enter.

Both mobile apps help you track medication, care needs, illnesses, and appointments. Having this information in one place is especially helpful when you are working with specialists and medical providers from different medical groups that use different calendar and records systems.

Another way to maintain records and information is to create a digital “notebook” on a personal computer. You might build folders just like you would in a physical notebook. Dr. Hempel Digital Network provides 10 health-record applications with options that combine electronic medical records with telehealth capabilities. Other applications work with cellular phones. Here are three: MTBC PHR, Medical Records, and Medfusion Plus.

Keep emergency information handy and easy to clean

A small “on the go” handout might be helpful for critical care appointments or emergencies. A laminated handout or a page tucked into a protective sleeve will be easier than a large notebook to disinfect after being in public. Depending on a child’s needs, caregivers might create multiple copies or versions of an on-the-go handout for easy sharing with daycare providers, school staff, babysitters, the emergency room, camp counselors or others who support children.

Key information for a quick look could include:

  • medications and dosages
  • doctors and contact information
  • emergency contacts—and whom to call first
  • allergy information
  • preferred calming measures
  • Plan for a caregiver’s illness

Another pull-out page or small notebook might include specific instructions about what to do if a caregiver gets sick. These questions could be addressed:

  • Who is the next designated caregiver?
  • Where can the child live?
  • What are specific daily care needs and medical care plans?
  • Is there a guardianship or a medical power of attorney?
  • Are there any financial or long-term plans that need sharing?

Step-by-Step Instructions

Building a Care Notebook does not have to be daunting. Most people start small and try different approaches until they find the best fit.  Here are a few ideas to start the process:

  • Choose a holding system that makes sense for your organizational style: notebook, accordion file, small file box, or a primarily digital system with limited “to-go” handouts.
  • Identify and label the document sections by choosing tools that fit your system: dividers, clear plastic document protectors, written or picture tabs, color coding, card holders for professional contacts, a hierarchy of folders on your computer…
  • Include an easy-to-access calendar section for tracking appointments.
  • Include a call log, where names are recorded (take time to spell full names correctly!) and phone numbers of professionals. Take notes to create a written record of a conversation. It is also practical to send a “reflective email” to clarify information shared in a call, then print the email, and tape it into the call log to create a more formal written record of the call.
  • A separate sheet of easy-reference information can be used to share with a caregiver in a new situation, such as daycare, doctor, camp, or a sleepover. Mommies of Miracles has an All About Me template that serves this purpose.
  • When appropriate, invite the child to participate.

Tools to help you begin

Quick and easy forms can help you start. Here are two options:

  1. Medical Home Portal Care Notebook and it comes in both English and Spanish
  2. Individual Healthcare and Emergency plans from PACER Center

Guidance to help build a more comprehensive care notebook is available from Family Voices of Washington. Printable forms can be done in stages and updated as needed to slide into a notebook or filing system. The templates include pull-out pages for Emergency Room or Urgent Care visits and forms to help organize medical appointments.

A child’s medical providers might help write a care plan and can provide specific contact information, medication lists and emergency contact procedures for each office. A school can provide copies of an Individualized Education Program (IEP), a Section 504 Plan, an Emergency Response Protocol, a Behavior Intervention Plan or other documents. If a child is in state-supported daycare (on location or in-home), staff can provide forms for emergency procedures and contacts.

You will thank yourself in the future!

Having information organized and ready can make it easier to apply for public services through the Social Security Administration, the Developmental Disabilities Administration (DDA), the Division of Vocational Rehabilitation (DVR) or others. For military families, a Care Notebook can make transitions and frequent moves easier to manage.

A well-established organization system also can help a child transition toward adult life. Easy access to a list of accommodations can ease that first meeting with a college special services office or provide a key set of documents for requesting vocational rehabilitation/employment supports. Easy access to key medical records can be the first step to helping a child learn what medications they are taking and advocate for an adjustment with an adult provider

Additional resources for long-term planning include:

Quick Look: How to Prepare for a Virtual Meeting

Posted on by Nicol Walsh

Schools and families continue to meet virtually to discuss special education services during the closures related to the coronavirus pandemic. Here are tips to help family members prepare for remote meetings to discuss a student’s Individualized Education Program (IEP), a Section 504 Plan, evaluation for special education services or something else related to a special education student’s needs and learning program.

For more comprehensive information, see PAVE’s article, “IEP on Pause? How to Support Continuous Learning with School Buildings Closed.”

  • Determine a regular communication plan with the school. That might include email, telephone, text, web-based meetings, U.S. mail, packet delivery by school bus…  whatever works for regularly checking in.   
  • Family caregivers can request meetings. PAVE provides a template to formalize the request: Sample Letter to Request an IEP Meeting. Included with the letter template is detail about who is required to attend IEP meetings, and those requirements have not changed.
  • The Special Education Continuous Learning Plan is provided by the Office of Superintendent of Public Instruction (OSPI) to support but not replace the IEP during the national crisis caused by the coronavirus pandemic. Included in the form is a sample meeting agenda.
  • Consider confidentiality and privacy issues. Ask school staff to describe how privacy and confidentiality are protected through a suggested meeting platform, and make sure to have any passwords or PINs ready to use when you log in or call into a meeting.
  • Before a meeting, ask to sign any necessary paperwork or releases to have special education records sent electronically via email. Special education records can include meeting notifications, IEP or Section 504 documents, assessments, progress reports, Prior Written Notices that describe meetings and planned actions, or other materials that contribute to the program review and goals.  
  • Review records before the meeting and write down questions to ask during the meeting. PAVE provides a Parent Handout Form or, for self-advocates, a Student Handout Form, that can help organize concerns and questions. Another version of a Parent Input Form is provided by the Washington Office of Superintendent of Public Instruction (OSPI).
  • Carefully review goals, services, accommodations, modifications and consider how they might apply or need to be adjusted for current circumstances. Think creatively and prepare to collaborate and request expertise from school staff. Pay special attention to the present levels of academic achievement and functional performance. These present levels statements, within the first pages of the IEP document, describe how the student is doing and where there are challenges. Wrightslaw.com provides tools specifically to support parents in reviewing IEP present levels in preparation for a meeting during COVID-19.
  • Consider whether the student will attend the meeting. A student who is 14 or older is invited as part of the state’s Pathways to Graduation planning. PAVE provides an article: Attention Students: Lead your own IEP meetings and take charge of your future.
  • Communicate early—before the scheduled meeting—to request updates about progress, a student’s present levels of performance, or other concerns. If family caregivers build a handout for the meeting, that can be submitted ahead of time to ensure that this information is part of the agenda.
  • Family members can request a practice session to test the technology. Part of that training might include practice sharing the screen to make sure everyone will be able to view important documents during the formal meeting.
  • As with in-person meetings, family participants can invite support people. A friend or family member might be able to attend and take notes.
  • Refer to parent and/or student input forms to stay on topic and ensure that all concerns and questions are addressed.
  • When the meeting ends, family participants can ask for a copy of the program recommendations page.
  • After the IEP meeting, the school provides a Prior Written Notice (PWN) to the family participants to review meeting notes and any decisions, agreements, or disagreements. Ask when and how the PWN will be provided. Family participants have the right to request amendments or corrections to the PWN.
  • Be sure to leave with a clear action plan. Here are key questions to ask and record:
    • What will happen?
    • Who is responsible?
    • When will the actions happen? Are there timelines?
    • How will we communicate for follow through?
  • As with any meeting, any unresolved issues can be addressed in a follow-up meeting.

To learn more, PAVE provides a six-minute overview of IEP basics and a 30-minute training video about special education.   

Map Your Future with Person-Centered Planning

Posted on by Nicol Walsh

A Brief Overview  

  • Person-Centered Planning (PCP) is a method for helping a person map out a future with intention and support.
  • Read on for more information about what Person-Centered Planning is like.

Full Article  

Everyone dreams about what they might do or become. Individuals with disabilities might need additional support to design the plans, set the goals and recruit help. The Person-Centered Planning (PCP) process is a tool that works like a Global Positioning System (GPS) to help a person figure out where they are starting and how to navigate to a planned destination.   

A PCP session is a gathering that can happen in a specific physical location, such as a school or a community center, or in a virtual space online. The people who get together might include family members, friends, teachers, vocational specialists, coaches—anyone who might help brainstorm ways to plan an enriched, full life for a person of honor.

The first step is to celebrate the gifts, talents, and dreams of the person. Then the group develops action steps to help that person move closer to their dreams and goals.  

Throughout the gathering, the attendees listen, ask questions, and draw pictures or write down words that contribute to the process. Respect for the person’s goals and wishes is a priority, and participants withhold judgment to honor the individual completely.  

Person-Centered Planning explores all areas of a person’s life. All people experience various times in their lives that are transitions. High-school graduation is a major example. Job changes, moving to a new home, entering or leaving a relationship: Those transitions happen for individuals with and without disabilities.

Individuals with disabilities have some additional transitions. For example, when a person leaves the special education system of public education at graduation or after age 21, there is a change in disability protections. A student receiving special education is protected by the Individuals with Disabilities Education Act (IDEA). In adult life, the right to accommodations and non-discrimination is protected solely by the Rehabilitation Act of 1973 (Section 504) and the Americans with Disabilities Act (ADA).

There are specific transitions that occur for individuals who qualify for support from the Developmental Disabilities Administration (DDA), which in Washington is part of the Department of Social and Health Services (DSHS). Employment and workforce training programs often are part of the transition from high school into what happens next.

During major life transitions, many service agencies focus on a person’s inabilities or deficits.  Person-Centered Planning, on the other hand, focuses on what’s positive and possible, based on the dreams and goals of the individual.

A PCP session includes a set of maps where information is collected in words and pictures. Here are some examples:

People in my Life     

This map names important people and their roles in concentric circles. These are people that the individual trusts for help and support and may include paid and unpaid supporters. Those who are closest to the person are in the circles closest to the center of the map.

Who am I?  My Story, My History    

This map is built during the session to describe the person’s story from birth up until the gathering. This map reflects what is most important to the individual. The facilitator might ask:

  • What parts of your life are important for people to know?   
  • What are some stories of your life that would be helpful for a coworker or a friend to know? 
  • Are you a sibling? A spouse? A parent?
  • How old are you? 
  • What activities do you participate in? 
  • Have you had any jobs?
  • Where do you live? Go to school?  
  • Do you have a medical concern that someone spending time with you might need to know about? 

 Likes and Dislikes  

The “Likes” list includes favorites, things that make the person happy. Favorite colors, foods, activities, places, people are listed. 

The “Dislikes” list includes the opposite of all those things and might also list triggers (bright lights, loud noises, angry voices, bullies) or other sensitivities.

What Works/ Doesn’t work 

The first part of this map asks: When learning a new activity or skill, what are steps and learning tools or activities that work for you? Answers might look like these examples: frequent breaks, accommodations, a written schedule, a list of duties, instructions in larger print, a preferred time of day to start something…. 

The second part asks: When learning a new activity or skill what activities do not work for you? Answers might resemble these examples:  waiting in line, too many instructions, too many people barking out orders, standing or sitting for too long, verbal instructions, unclear expectations….  

Gifts, Talents and Strengths  

This map asks several questions: 

  • What are you good at?
  • What can you do that is easy for you? 
  • What are your best qualities? 
  • What do people like about you?   

Examples for answers:  best smile, cleaning, giving, caring, natural dancer, very social, great with computers, good with numbers, great at sports, good listener, good with animals, etc.   

Dreams /Nightmares 

The My Dreams map asks: Where you would like to see yourself in a few years?  Follow-up questions:

  • What will you be doing?
  • What would your dream job be?  
  • Where are you living? 
  • Do you live on your own or with family or a roommate?  
  • How are you keeping in touch with your friends?   
  • What is an action you can take to move toward your dream or goals?    

The Nightmare Map asks:  What do you want to avoid?  Follow-up questions might include this one: Where do you not want to be in a few years? This is not to make the person feel bad but to make an out-loud statement about what the person doesn’t want to happen. This can include actions or thoughts that someone wants to avoid.  

Needs 

The Needs map asks:  What do you need help with to avoid the nightmare?  A follow up question might include: What areas do you need support with? Answers might look like these examples: budgeting money, learning to drive, training to ride the bus, cooking lessons, looking for a job. The goal is to recruit support to help the person stay away from the nightmare and work toward the dream.   

Action Steps  

A map that show Action Steps includes the specific help that will assist the individual in moving toward the dream. This chart typically details what needs to be done, who will do it, and by when. 

Example:    

Goal: To Write a Resume     
Who: Michele 
What: Call Mark to ask for help.  
By When: Next Monday, April 6, 2020 

This process involves many support people in the person’s life and identifies, in a self-directed way, areas where help is needed to meet personal goals. The gathering involves the important people in someone’s life because they can help through the process and step up to offer support for the action steps. 

How to get a Person-Centered Plan  

Here are places that might help you find a PCP facilitator in your area:  

  • Developmental Disabilities Administration (DDA) 
  • Division of Vocational Rehabilitation (DVR)
  • School District 

Here are a few additional places to seek information about Person-Centered Planning:  

Inclusion.com: All My Life’s a Circle  

Inclusion.com: The Path Method 

Video from PAVE, Tools 4 Success  

Informing Families.org