Life After High School: Gregory's Story

by Carrie Morehouse, Guest Contributor

Our son, Gregory, was born with a rare condition called Zellweger Syndrome. At the time he was diagnosed, the specialists informed us that because of his deafness, blindness, and cognitive delays, he probably would never learn or live in the community. They advised me to just bring him home and love him, but not to expect much. We took their advice, and Gregory has been abundantly loved!

We also ignored their advice, and Gregory was always presumed competent with the capacity to learn and grow.  In school he was offered numerous special programs for students who were deaf-blind. He amazed us with his abilities.

During his high school transition years, he was exposed to numerous community-based vocational opportunities and was enrolled in the School to Work program during his last year of school. School to Work is a partnership between school, the county, DDA, DVR, and the employment vendor to assist students in being gainfully employed with supports in place before they leave school. We engaged in Person Centered Planning and developed a plan to help provide meaningful opportunities for Gregory. 

In June 2013, Gregory graduated from the transition program at Lake Stevens High School in Snohomish County with a volunteer position. Six months after graduation, he got his first paid job at Any Time Fitness.

I was well prepared for the day when the bus didn’t show up come fall—in addition to work and volunteering, we set up a Medicaid Personal Care provider to be with him during the day and to keep him active—but it still wasn’t enough.  We soon realized that, despite various community activities, volunteering, and work, we didn’t set up social activities to build relationships with peers.

Regardless of engaging in community activities, his life was isolating and lonely. His sister went off to college and would come home with tales of her great big new life, with new people and new opportunities, and we realized that Gregory needed a great big life that included other people his age and more than one caregiver at home with him. 

I wished we would have worked on that more while he was in school so that he left with a circle of friends. We overlooked that, and it was much more difficult to create without the support of an already established/manufactured group of classmates.

The good news for Gregory is that he recently moved in to a supported living situation with peers and caregivers supporting vocational and recreational activities that keep him busy and connected to others. Now when he comes home or we visit, we learn about his great big new life that includes new experiences, new opportunities, and new friends.

Developmental Disabilities Endowment Trust Fund: Invest in Life

by Margaret-Lee Thompson, Guest Contributor

The Developmental Disabilities Endowment Trust Fund has a rich history in our state. It started at a coffee for a few Legislators in the middle 1990’s. Senator Dan McDonald (R) told us about a family friend, Barney, who had impacted him as he watched Barney age. He proposed the Endowment Trust Fund. We were all so excited.

A few of us parents participated in working on the bill’s language with Senate staff. After a lot of hard work and eleventh hour nail biting, it passed! It was the first of its kind in the nation, a public-private partnership that promotes investing and planning for the future.

Governor Gary Locke (D) appointed seven members to be on the DD Endowment Trust Fund board: four were parents that he knew and the others were professionals that Senator McDonald knew. I was one of the parents selected to be on the Board, and now serve as Chair. Out of the current seven members, six are family members who have a loved one with a developmental disability.

Organizationally, the Washington State Developmental Disabilities Council performs administration duties to our Trust Board, while The Arc of Washington State manages the Trust accounts and interfaces with the individual or family. Both of these organizations have long histories in our state in being involved in best practices for individuals with developmental disabilities.

Ben H. enjoying his ETF funds, saved throughout
the year from his work earnings.

All through the years, the DD Endowment Trust Board has paid exceptional attention to what would work well for parents, family members, and individuals with developmental disabilities. Careful attention was given to make sure the Trust is affordable and accessible through the following incentives:

• One-time enrollment fee of $600 that’s matched by the state in full after the end of the 3-year vesting period;
• Low $25 month minimum contribution; and,
• State matching funds on fees help to reduce overall costs.

Unlike an ordinary trust, which counts as an asset that can interfere with Social Security benefits and Medicaid funding, the DD Endowment Trust Fund is what’s called a supplemental (or “Special-needs”) trust by law. Funds in a trust account do not affect the eligibility for these benefits and services that are so important to an individual’s future.

We’ve growth quite a lot. There are now over 2,000 trusts, which include two types:

• Trust I, which receives contributions by family members and others for the benefit of the individual; and,  
• Trust II, which receives contributions by the individual.

Many of our sons and daughters have become Trust II holders to invest their work and other earnings without risking needed benefits due to asset and resource limits. The individually-based criteria for expenditures of the Trust work well for them.

The Trust I accounts set up by parents and family members bring a sense of calm for their son or daughter’s future.

The Board of the Trust gives great attention on decisions for you and your child’s future. Please feel comfortable in accessing information at the DD Endowment Trust website or by phone: 360-705-9514.

I hope to see our Trust grow from your participation!

An Uncommon Love Story

(by Diana Stadden, Guest Contributor)

A beautiful bride, a handsome groom, surrounded by family and friends celebrating their love, it seemed like a typical event in many people’s lives. But this wedding was not a typical one. Their love was foretold as something that would never happen, not because of common obstacles to a relationship, but because these two young sweethearts have developmental disabilities.

My son David, diagnosed with autism at an early age, and Brittany, who has a genetic disorder that includes a learning disability, met while in high school and attended the same church youth group. Brittany, a very shy and charming young lady, was introduced to David by a friend and they immediately shared a bond of friendship that grew into love.

A few months after they began dating, Brittany’s family came upon hard times and she needed a stable place to live. I invited her to move in with our family, sharing my room, enabling me to really get to know her sweet personality.

There were many things that Brittany had never had or experienced, one being a special birthday party, so for her 18th birthday we held a big birthday dance. Brittany and David’s love had continued to blossom and at the birthday party, with their family and friends surrounding them, David nervously got down on one knee and asked Brittany to be his wife. Eight months later they were married and began living their dream.

Today, they are settling in to their new life as husband and wife. They are both on a pathway to employment; David enjoys fixing computers and Brittany is working with children with developmental disabilities in a Head Start program through her high school transition program. Eventually, they plan to have their own home and someday start a family.

Everyone has the right to a full life, and they often just need the support of those around them to help make it happen. I have been blessed with a wonderful son, who I am so incredibly proud of, and a daughter-in-law who is everything I could have hoped for to share his life with him.

Believe your child is capable of anything and they will show you that they are!

From a very happy mom,
Diana

Beyond Labels

Beyond Labels: Erasing the Stigma of Invisible Disability features four Washington State parents  who share their thoughts on the importance of seeing and thinking beyond labels.

Please watch and share. It's an important discussion. Let's start talking.