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.

Relatives Raising Children Face Unique Challenges

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

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

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

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

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

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

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

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

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

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

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

Holiday Survival Tips For Families with Special Healthcare Needs

Everyone can get overwhelmed around the Holidays. Routines are disrupted, different or excessive foods might be in easy reach, and emotional triggers can come from many directions. Individuals with disabilities might be especially sensitive to those issues. This article provides a four-part planning guide to help families manage a change in routine, plan for outings, provide special care and travel with children who have special needs during the holiday season.

Routine

  • Great Expectations

A schedule filled with events outside of a typical schedule may be disorienting to some children. Plan to follow a typical routine for some aspects of each day and discuss special events ahead of time so your child can feel prepared.

  • Children nestled all snug in their beds

Maintain your child’s sleep schedule to the best of your ability. Consistent wake-up and bedtime schedules can help everyone’s level of calm.

  • Three Bears Principle

Finding the “just-right” amount of holiday celebrating can be tricky. Don’t try to make it to all the holiday events. Choose wisely and feel free to decline invitations. A child who gets enough down time between events is more likely to enjoy the festivities.

Plan Ahead

  • Special Santa Sack

If your child has sensory sensitivity, have a bag of toys and tools ready to go so you’ll have options if a shopping trip, holiday party or other event gets over-stimulating. Some children take comfort from earplugs for noisy situations, headphones for listening to favorite music, electronics, fidgets, blankets, or extra comfy clothes.

  • Medicine

Have a bag ready to go with necessary medications, supplies, and equipment. You may want to pack extra for unexpected delays in your adventures. Sugary foods at holiday gatherings might impact planning for children who need diabetes care. You may choose to use an insulin pump to avoid multiple injections so your child can enjoy the holiday without feeling too different or overwhelmed.

  • Visions of Sugarplums

Holiday meals or treats might be off limits to children with specific allergies or food sensitivities. You may need to pack some back-up snacks and treats that work well. Being prepared could prevent your child from feeling left out of the festivities. If your child has a severe allergy, remind family and guests ahead of time to practice extra caution. Kissing and hugging can be dangerous due to cross-contamination.

Handle with Care

  • City sidewalks, busy sidewalks

Silver bells, strings of streetlights and all the other hustle and bustle may overwhelm children with sensory sensitivities. You may want to consider an off-hour time to see Santa or simply avoid the most popular attractions and choose quieter activities to help your child enjoy the season.

  • At Christmas, parents need a village

Don’t put all the pressure on yourself to make the holiday perfect. Ask for support from family, friends, doctors and therapists, and step back to let them do their parts to reinforce positive messages and expectations. 

  • Saying no can be nice

If a certain activity is simply too much for your child, you or other members of your family, it’s okay to say no! Choose what works best and toss the guilt if you need to decline an invitation.

  • Something under the tree, for me

Whether you go shopping, head to the spa, soak in the tub or simply pause to take five long breaths, plan some self-care. Remember that when you put on your own oxygen mask first, you’ll be stronger and more prepared to help others.

  • Thanks is a gift

Taking time to reflect on gratitude can help shift you away from feeling overwhelmed and toward feelings of peacefulness and grace. It’s ok if things don’t go as planned and it’s ok that your family is different. Your holiday might require a little extra planning and patience, but your child’s life is a gift that can be treasured for its unique specialness.

Not Home for Christmas?

If your holiday includes planes and trains, be sure to let agents and attendants know about your family member’s special accommodation needs. Here are a few contacts for Washington travelers:

Sea-Tac Airport (preflight preparations available): email customerservice@portseattle.org

Spokane Airport Administrative Offices: (509) 455-6455

Amtrak Accessibility services 

 

 

 

 

Stay Cool when Summer Heats Up

Summertime brings special challenges for families whose children have special needs. Some medical conditions and medications make individuals particularly susceptible to the heat. Be sure to check with your doctor about which medications might increase heat sensitivity.

Keep in mind that extreme heat combined with humidity can make a person even more vulnerable. It’s harder for the body to sweat and cool itself off when the humidity rises, making it even harder to maintain a healthy body temperature.

The US Department of Homeland Security manages a website, Ready.gov, to help people prepare for and mitigate emergencies, including a variety of natural and man-made disasters. The website offers articles translated into a variety of languages. The campaign provides these bits of advice related to the risks of extremely hot weather:

  • Extreme heat can occur quickly and without warning.
  • Older adults, children, and sick or overweight individuals are at greater risk from extreme heat.
  • Humidity increases the feeling of heat as measured by a heat index.

Here are a few ideas for your family when the heat is on:

  • Stay indoors and in an air-conditioned environment as much as possible unless you know your body has a high tolerance for heat.
  • Drink plenty of fluids but avoid beverages that contain alcohol, caffeine or a lot of sugar.
  • Eat more frequently, but make sure meals are balanced and light.
  • Never leave any person or pet in a parked vehicle.
  • Avoid dressing babies in heavy clothing or wrapping them in warm blankets.
  • Check frequently on people who are elderly, ill or may need help. If you might need help, arrange to have family, friends or neighbors check in with you at least twice a day throughout warm weather periods.
  • Make sure pets have plenty of water.
  • Salt tablets should only be taken if specified by your doctor. If you are on a salt-restrictive diet, check with a doctor before increasing salt intake.
  • If you take prescription diuretics, antihistamines, mood-altering or antispasmodic drugs, check with a doctor about the effects of sun and heat exposure.
  • Cover windows that receive morning or afternoon sun. Awnings and window coverings can reduce the heat entering a house by as much as 80 percent.

If you go outside:

  • Plan strenuous outdoor activities for early or late in the day, when temperatures are cooler.
  • Take frequent breaks when working outdoors.
  • Wear a wide-brimmed hat, sun block and light-colored, loose-fitting clothes when outdoors.
  • At first signs of heat illness (dizziness, nausea, headaches, muscle cramps), move to a cooler location, rest for a few minutes and slowly drink a cool beverage. Seek medical attention immediately if you do not feel better.
  • Avoid sunburn, which slows the skin’s ability to cool itself. Use a sunscreen lotion with a high SPF (sun protection factor) rating.
  • Avoid extreme temperature changes. A cool shower immediately after coming in from hot temperatures can result in hypothermia, particularly for elderly or very young people.

If the power goes out or air conditioning is not available

  • If air conditioning is not available, stay on the lowest floor out of the sunshine.
  • Ask your doctor about any prescription medicine you keep refrigerated. (If the power goes out, most medicine will be fine to leave in a closed refrigerator for at least 3 hours.)
  • Keep a few bottles of water in your freezer; if the power goes out, move them to your refrigerator and keep the doors shut.

The Washington State Department of Health lists additional ideas through its website. Some Extreme Heat Cooling Centers in Washington State are listed through the state’s 211 Information Network.

Supplemental Security Income (SSI)

WHAT IS SSI?

SSI is a monthly financial benefit from the Social Security Administration to people with limited income and resources who are age 65 or older, blind or disabled.  Blind or disabled children, as well as adults, can get SSI.

In most states, SSI determination is required for Medicaid eligibility of children with disabilities.

ELIGIBILITY REQUIREMENTS:

  • Financial Determination
  • Parental income is deemed, counted then prorated among the family members
  • Exclusions
  • Income includes Earned and Unearned Income
  • Parental Resources are counted
  • Disability Determination

Specific requirements:

Marked and severe functional limitations as defined by the Social Security Administration the limitations must have lasted or are supposed to last for a continuous period of 12 months or longer

The decision is made by a State Agency, Disability Determination Service, specifically,  a team composed of a disability examiner and a medical or psychological consultant

What does the Social Security Administration Need?

  • Social Security Card for all children
  • Proof of Age—Birth Certificate for all children
  • Citizenship—Birth Certificate
  • Proof of Income—3 months LES
  • Earned-wages and special pays
  • Unearned Income-BAH/quarters and BAS

Proof of Resources:

  • Bank statements
  • Deed or tax appraisal
  • Insurance Policies
  • Certificates of Deposit, Stocks and Bonds

Proof of Living Arrangements:

  • Deed, tax bill, or lease receipt
  • Medical Assistance Cards
  • Information about household costs, (utilities)

Medical Sources of Information:

  • Medical Reports stating disability
  • Names, addresses and telephone numbers of doctors and other medical service providers
  • Names and Documentation on how disability affects the day-to-day activities.

How To Apply?

Go to local Social Security Office, ideally in the middle of month for faster service

Call the SSA office at 1-800-772-1213

While stationed overseas and you think your child may be eligible for SSI, you can apply by contacting the Federal Benefits Unit at the following Embassies or Consulates:

Germany Federal Benefits Unit
American Consulate General
Giessener Str. 30
60435 Frankfurt, Germany
Phone: 49-69-7535-2496
Fax:  49-69-749-352

England Federal Benefits Unit
American Embassy
24/31 Grosvenor Square
W1AW 2LQ London, England
Phone: 44-207-499-9000
Fax: 44-207-495-7200

Japan American Embassy
Federal Benefits Unit
1-10-5 Akasaka
Minato-ku, Tokyo
107-8420 Japan
Phone: 81-3-3224-5000
Fax: 81-3-3505-1862

Korea Social Security Division
Veterans Affairs
Regional Office
American Embassy
1131 Roxas Boulevard
0930 Manila, Philippines
Phone: 63-522-4716 or 63-2-526-5936
Fax:  632-522-1514

Things to Remember

  • It can take up to 180 days for approval.
  • Payments are retroactive to the date of application.  Your initial contact may be considered the date of contact.
  • 1 of every 5 applications are denied—APPEAL.*
  • When talking about the disability discuss the worst days, not the best.
  • It is necessary to complete both disability and financial determinations when assessing eligibility. This is because SSI eligibility determination may be used in other programs within your state.
  • Establishing the disability eligibility will enable your child to receive SSI when they turn 18 and the parent’s income is no longer considered, or if their economic situation changes.
  • *Tip: Appeals to decisions are common and a right for your child
  • Special Consideration for military families OCONUS
  • Continuation of SSI benefits for families who PCS CONUS to OCONUS who meet the following criteria:
  • Was eligible to receive SSI in the month before parent reported for duty overseas—payments will continue from the state you last were eligible

Report information regarding:

  • Moves of the child
  • People move into or out of the home
  • Changes of financial status
  • Leaving the Armed Forces and remaining overseas

For more information visit the SSI web page

“Working Together with Military Families of Individuals with DisAbilities!”