Journeys in Healthcare from a Youth Perspective Part 3

In the third episode of Journeys in Healthcare from a Youth Perspective, 34 year old Cody shares about his experience when he was younger dealing with cerebral palsy and epilepsy. He experienced seizures most of his life, and was impacted by them daily. Due to his special healthcare needs, Cody lives an unpredictable life. However, he doesn’t let that stop him. He is involved with his church, has an active social life, works, and lives a a full life to the best of his ability. Instead of being slowed down by his healthcare needs, Cody learned to communicate, self-advocate, and work past any barriers that come his way.

Get Ready for Your Meeting with a Handout for the Team

Parents and students who go to meetings prepared and organized are more likely to come away feeling heard and with a good action plan. This article can help you and your student prepare a one-page handout to share with the school or another service provider. Most important is to highlight the student as the most important person at the meeting—even if he/she isn’t ready to attend in person!

If a young person is ready to lead all or part of a meeting, PAVE encourages this! Understanding the Individualized Education Program (IEP) and facilitating an IEP meeting is a great way to build lifelong skills and confidence. See PAVE’s article: Attention Teens: You Can Lead Your IEP Meeting.

For a student who isn’t ready or able to attend the IEP meeting, helping to prepare a document can be a great way to participate. Note that this form can be adapted for any service delivery meeting at school or in a childcare or medical setting.

Keep your handout short to highlight your most important points. This handout brings your child and your concerns to the attention of the group and sets a tone for the meeting that is child- and family-centered.

Note: You can send your handout to the school before the meeting, so team members have a chance to read it in advance. If there isn’t time to distribute it before the meeting, you can take a moment when you arrive at the meeting to hand out your one-pager and encourage everyone to take a few moments to read it.

The top of your handout should include your contact information and other basics about the meeting. Your handout will become part of the official meeting record, so get formal and include all of this:

  • Parent Name: Jane Hearmenow
  • Phone/email: 555-555-5555/memail@thisplace.com
  • Meeting Date/Time: XX/XX/XXXX, 3-5 pm
  • Location: Anywhere Elementary  
  • Topic: IEP Review, Evaluation Review, Section 504 Plan, Re-entry after Discipline, Medical provider appointment, etc.

Next you want to highlight what makes your child awesome. This is also a place where your child can voice his/her own opinions and “self-advocate” for accommodations or help. Here are sentence starters that might help you create bullet points or a paragraph about your child:

  • NAME enjoys…
  • He is motivated when… 
  • She’s interested in…
  • He wants more help in the area of…
  • She said she likes school the most when …
  • He says teachers are helpful when they…
  • She says she wants to learn more about …

Include a Photograph!

A photograph of your child shows the Very Important Person (VIP) and can make everyone smile as the meeting starts.

The final section of your handout describes your concerns. You may need to start on scratch paper with a longer list and then edit to prioritize your key points. Remember that you want the team members to be able to read your handout quickly. You also want this list to help track your priorities at the meeting. If it gets too long, you won’t be able to use it as a handy reference.

Here is a sample short paragraph to get you started, and your introductory paragraph can be followed by key bullet points:

My son/daughter’s disability in the area of [briefly describe the condition] makes school difficult because… My biggest concern is that …

My primary topics for today’s meeting include:

  • A need that isn’t being met
  • A communication or behavior challenge
  • Something you want to change because it isn’t working
  • A goal that isn’t being met
  • Something working well that needs further development
  • Anything else concerning

If you or a support person takes notes at the meeting, it’s great to conclude by making a list of Action Items. Make a simple chart to list:

  • The agreement/action
  • Name of person responsible
  • Deadline
  • Communication plan, so you have follow-through

If your meeting is part of a formal special education process, such as an IEP meeting, the school provides parents with a letter called a Prior Written Notice (PWN) to reflect agreements and discussion at the meeting. Your handout and notes provide checks and balances with the school’s PWN and guarantees that your concerns and those of your student are part of that formal meeting record.

The website of the Office of Superintendent of Public Instruction (OSPI) provides information about PWN requirements for schools in Washington. According to OSPI, “Prior Written Notice is a document outlining important school district decisions about your student’s special education program. It is not a meeting invitation. School districts must provide you with Prior Written Notice after a decision has been made regarding matters affecting your student’s IEP or eligibility for special education, but before any decision is implemented or changes to your student’s program take place.

“Prior Written Notice must be provided in your native language or other mode of communication that you understand.”

PAVE provides a variety of articles on core topics related to special education, including the IEP process, goal tracking, evaluation and Section 504 Plans.

The Parent Input Form for a Meeting with the School  is here for easy download. If a download is not possible, all the information is above. If you need any support with this form, please email PAVE

ABLE: An Account to Overcome the SSI Resource Limit for Adults with Disabilities

Living with a disability can be difficult and costly. Adults who receive benefits from the Social Security Administration because of disability often are challenged to improve their life circumstances because of a $2,000 resource limit. This limit means that a person receiving payments from Supplemental Security Income (SSI) or the Social Security Disability Insurance (SSDI) program cannot have a bank account balance or any other resources on hand that exceed $2,000, without losing part of their benefit.

Savings of $2,000 or less can be limiting for someone who might want to move into a new home, invest in a vehicle or save for higher education or a vocational training program.

The government provides a way for individuals with disabilities to overcome this barrier and save money. The Stephen Beck Jr. ABLE (Achieving a Better Life Experience) Act of 2014 allows individuals to save up to $15,000 annually without losing benefits. ABLE is modeled after college savings plans. The savings and/or investment account bypasses the SSI resource limit and can grow interest tax-free.

There are some restrictions:

  • The account holder must meet criteria for a disability that began before age 26.
  • The account may not receive more than $15,000 per year.
  • If the account balance exceeds $100,000, Social Security benefits are impacted.
  • Most accounts have a total lifetime balance limit of $500,000.

ABLE account money may not be spent on just anything. Generally, the account funds can be used to pay for expenses that may help improve independence or quality of life.

Here are a few examples of qualifying expenses: 

  • Housing
  • Education
  • Transportation
  • Personal assistance
  • Assistive technology
  • Health and wellness
  • Employment training and support

Savings in an ABLE account are insured by the Federal Deposit Insurance Corporation (FDIC). A chosen percentage of funds in the account may also be allocated as uninsured investment money. The account holder can choose a low-, median-, or high-risk investment strategy. Low-risk is the safest, most conservative option, with the lowest possibility for return. A high-risk investment might make more money but also could lose more. A median-risk investment is somewhere in between. Based on the account holder’s choice, the money is automatically allocated into some combination of stocks, bonds, and mutual funds.

An individual considering these options may want to consider how long the money will be in the market and risk tolerance. ABLE does warn that invested money is not insured and that money, including principle, may be lost over the course of an investment period.

Although the program was federally enacted, ABLE is state-run. Washington’s program opened for enrollments in July 2018. So far, enrollments have been low, with the State Department of Commerce reporting that only a few hundred people have opened accounts. Commerce estimates about 30,000-50,000 people in Washington are eligible for the ABLE Savings Plan and have the financial assets to open an account.

The Columbian newspaper in Vancouver recently included an article about the ABLE program and quoted Peter Tassoni, commerce disability workgroup manager: “I had hopes we’d have higher enrollment rates. I thought there would be more of a backlog of people wanting to join the program.”

Forty-one states and the District of Columbia have ABLE Savings Plans. Oregon’s plan was a year and a half ahead of Washington’s, so some Washingtonians signed up early through that option or through the national ABLE For ALL Savings Plan.

Individuals can shop around for the best program to meet their needs, and some states accept clients from all 50 states, including Virginia, Ohio, Nebraska, and Tennessee. Virginia is among a few states that issue a debit card for the account. The ABLE National Resource Center provides a toolkit for reviewing the various state programs to find the best fit.

The account holder, family and friends can deposit funds into the account using post-taxed dollars. Contributions are not federally tax deductible; however, some states may allow for state income-tax deductions for contribution made to an ABLE account.

One way to apply is to type “Open an ABLE account” into a search engine. If you also type the name of the state, you can find links that will take you directly to that program.  Washington’s ABLE Savings Plan links directly to a clickable form to determine eligibility. 

Here are additional resources for more information:

Washington ABLE Savings Plan: WashingtonStateABLE.com, Phone: 1-844-600-2253 from 9 a.m. to 5 p.m. or 1-844-888-2253 (TTY) from 6 a.m. to 5 p.m. Monday to Friday.

Oregon ABLE Savings Plan: OregonABLESavings.com, Phone: 1-844-999-2253 from 9 a.m. to 5 p.m. or 1-844-888-2253 (TTY) from 6 a.m. to 5 p.m. Monday to Friday.

ABLE For ALL Savings Plan (national plan): AbleForAll.com, Phone: 1-844-394-2253 from noon to 5 p.m. or 1-844-888-2253 (TTY) from noon to 5 p.m. Monday to Friday.

 

Get Ready for Summer with Camp Planning

Planning summer camp for children with special needs requires a bit of extra thinking and planning. Your initial questions might feel fear-based:

  • Will the camp be accessible enough?
  • Will she be safe?
  • Will they care for him? 
  • Will the kids be nice?
  • Is she ready? Am I ready? 

Getting organized can alleviate your fears and help set your child up for a safe and fun summer experience. These broad-based questions can help narrow your search:  

  • Would your family prefer a day or an overnight camp?
  • Given your child’s unique circumstances, would it make sense to arrange special supports in a camp designed for all children?
  • Would an inclusive camp with a caregiver be the best fit? 

A guide to help you seek answers to these and other questions is The Center for Children with Special Needs Summer Camp Directory, which lists camps designed to meet unique medical, social and emotional needs. This directory lists overnight camps and week-long adaptive day camps.   

Here are some additional tips for getting ready:

Talk About Camp Early and Often

Make this a family project. Discuss the possible activities with your child, look at pictures and call the people at places that sounded interesting. Focus on what sounds fun and what it might mean to make new friends and share adventures. Invite your child to talk about what might feel scary—and that feeling jittery or homesick is a normal part of going to camp for all children who are new to the experience.

Practice makes perfect

Many camps have open houses or visiting times so a child can look around and begin to get comfortable with the environment. Have staff show you around and talk about the schedule so your child can feel prepared and know what to expect.

Safety First

Help your child talk about self-care routines. Your child can practice asking for something he or she might need, and you can talk about who the helpers will be. This is great practice in the life skills of self-determination and self-advocacy! Your child can also help you write down special instructions for the camp staff. Talk openly to the camp director, and document allergies and things to avoid. Ask whether a specific staff person can be assigned to your child so that person can receive training directly from you. Make sure to include specifics about your child’s unique needs (e.g.: He tends to have a tantrum if you ask him to rush; she walks in her sleep; or he needs a calming spot, a hideaway or a swing.) Help the staff feel prepared to help your child succeed, relax and have fun!

Make sure to talk with your child about privacy, safe touch, and respecting one’s body. Ask the camp what they have in place to ensure safety.

Check in With Your Child’s Doctor

You can schedule a medical appointment to talk about do’s and don’ts at camp. For example, DO go swimming and have a great time, but DON’T jump from high places into the water if a medical condition like brittle bones makes this dangerous. At the appointment, you can request additional dosages or back-up medications as needed. If your child has serious health concerns, a camp with nurses or doctors trained in your child’s specific condition may be necessary. You or a paid caregiver also might be able to visit during lunch or another time of day to provide needed medical supports, and this can be discussed with your provider during this pre-camp medical check-up. Be sure that everyone involved knows what is expected and who is responsible for which aspects of your child’s care.  

Don’t forget to include sunscreen, lots of water, and a hat for summertime heat. Take note if your child is taking a medication that might increase heat sensitivity.

Make a List and Check it THRICE!

Many camps provide detailed packing lists, but your family’s list will include specific items for your child’s individual comfort or unique circumstances. Medications, emergency changes of clothes, pads, or other medical supplies need to be written down to make sure they make it to camp!

Zip-closure baggies labeled with a Sharpie pen might help you get organized. You can write instructions on index cards inside the baggies. A Care Planner can help, with a medical release, copies of medical cards and instructions about where to take your child in an emergency.  Here are some resources to help you create a Care Planner:

Organize Your Child’s Medical and School Documents with a Care Notebook
Familyvoices.org
Seattle Children’s Hospital Center for Children with Special Needs
National Center for Medical Home Implementation

Enjoy Your Me Time

Wish your child an excellent adventure, and don’t forget to treat yourself to some self-care time while your super special child is away at camp!