Thursday, September 18, 2014

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. 

Gregory and family after graduation
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.

Wednesday, September 10, 2014

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!

Thursday, September 4, 2014

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,

Tuesday, September 2, 2014

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.

Friday, August 29, 2014

Not So Big Announcement by Rachel Nemhauser

I’ve been keeping a secret for a while, but the cat is finally out of the bag.  After 9 months of work, commitment, effort, hard choices and occasionally going to bed with a rumbling belly, I have officially lost 100 lbs.!  You read that right – I have lost one hundred pounds.  I am slimmer and more fit than I’ve been since becoming a parent and I feel really great about it. 

I gained a hundred pounds over the course of 13 years as a mom.  My devotion to my kids and family meant neglecting my own health and needs for a long time.  The years of worry over Nate’s development didn’t help, and I spent almost a decade using food as a method to unwind and cope. I told myself I needed and deserved the rich, sweet, delicious foods I was eating because my days were really hard.  And they were (and sometimes still are) really hard. A bowl of ice cream definitely didn’t make a speech therapy session more effective, or Nate’s hyperactivity slow down, but it may have made me care a little less.
Being overweight was never devastating to me.  I was active, I could keep up with my kids, my health wasn’t suffering yet, and my husband never stopped finding me attractive.  I had friends who loved me, a career I was proud of, and clothes I looked forward to wearing.  I was a good friend, a good citizen and a fun person to be around. I was OK with who I was, didn’t want the failure of diet after diet under my belt, and wasn’t driven to change. I secretly rolled my eyes when conversations turned to fitness or nutrition, and knew that immersion in those worlds was not my thing.

How did it happen then, and how did I stick with it for so long? Certainly parenthood didn’t become easier.  Nate still brings worry, exhaustion and stress to my daily life. Ice cream still seems like it would help. I’m no more an expert on fitness or nutrition now than I was 9 months ago but I do have some thoughts on weight loss to share:

1)      I never could have done this alone.  My husband and I dramatically changed what we ate, but we did it together and held each other accountable.  My close friends supported my pickiness around dining out and my kids kept their complaining about our diet changes to a minimum.  I needed every ounce of their support and encouragement and was lucky enough to get it.

2)      My whole life has not changed.  I’ve heard other people who have lost a lot of weight say that their weight loss changed everything.  I absolutely look better in my clothes and have more confidence in my appearance than I did before.  I also have more energy and stamina, and my feet hurt less.  Most aspects of my life remain the same though.  I still find the topics of nutrition and fitness kind of boring.  I still have back pain.  My kids still frustrate me and my house still seems to always be messy. I’d like to think I’m still funny and a good friend too. The things I am most proud of about myself haven’t changed, and are completely unrelated to my weight. 

3)      For me, exercise played only a small role in my weight loss. I never once in 9 months set foot in a gym, and for most of the time simply walked briskly for 30 minutes a day.  I’ve recently incorporated jogging into my weekly routine but most of the time I stick with walking. I lost weight because I changed the way I was eating, and not because I spent hours working out. 

4)      Goodbye sugar, hello veggies. I cut out ALL sugar and carbs and relied primarily on eating vegetables and protein, along with food provided to me by the diet program I used.  For me, eliminating all sugar meant I stopped craving sweets (I never would have believed it if it hadn’t happened to me) and didn’t experience extreme hunger most of the time. I almost never cheated because I didn’t want the cravings to come back. At first, eating 2 cups of veggies at every meal was almost impossible and I begrudgingly choked down more than my fair share of Brussel sprouts and cauliflower, hating every bite.  However, over time I’ve learned how to prepare them in a way that I can tolerate (and occasionally even manage to enjoy) and eating veggies has become my habit. 

5)      My weight loss is a lifetime commitment. I am only a few pounds away from my goal weight and then it will be time to shift gears into “maintenance” mode.  Truthfully, I’m scared.  I don’t want to gain the weight back, but I also don’t want to obsess about food for the rest of my life.  I hope that if I keep my support system around me, stay moderately active and continue to be mindful of the food choices I make, I’ll keep the weight off.  I will try my best, and that’s all I can do. 

6)     Please don’t offer opinions on whether I should stop losing weight, or should continue to lose more.  My doctor and I together have chosen a goal weight that is right for me, based on my age, my build, and my health goals. Although well-meaning and loving, those comments and inquiries feel like an invasion of my privacy. I feel strongly that what I weigh and what I want to weigh is only between my doctor and me. I love compliments about my new look, but please avoid talking numbers with me.

I’m still a mom who is devoted to her children and family. I’m still the parent of a son with a disability.  I’m still great at snuggles but not so great and imaginary play-time. I’m still irreverent and tend towards eye-rolling when talk turns to nutrition. I’m a lot more likely to smile at myself in the mirror, but I’m still unlikely to care what brand of jeans I’m wearing. I have accomplished something pretty big, but I know I don’t have all the answers.
I am still Rachel, but now I am 100 pounds lighter. 

Wednesday, August 27, 2014

What are you waiting for?

Close to 14,000 individuals are waiting for services from the Developmental Disabilities Administration (DDA)—a group so large, it's been given its own name: the No Paid Services (NPS) Caseload.

As a result of legislative action and upcoming changes to key state programs, DDA anticipates being able to provide services to as many as 5,000 individuals who are currently on the NPS caseload, beginning mid-2015 (and beyond). Most will be enrolled in the Individual & Family Services (IFS) program, which is for children and adults who live in the family home. IFS includes services such as respite, therapies, behavior support, and other interventions that help the individual continue to live at home.

Because DDA will identify individuals from a list of those who have been assessed to need services, it's important to make sure you're on the Service Request List. (Note: This is a new term to learn for those who are used to hearing wait list or enrollment database.)

If you or someone you know is on the NPS caseload, consider this a friendly reminder to contact your local DDA office and leave a message, asking to be assessed for IFS (or confirming that you are on the Service Request List if your son/daughter has already been assessed).

Here are the numbers:

Region 1: (Spokane) 800-319-7116; (Yakima) 866-715-3646

Region 2 (Seattle) 800-974-4428; (Everett) 800-567-5582

Region 3: (Tacoma) 800-735-6740; (Olympia) 888-707-1202

Friday, August 22, 2014

Attention: Changes Ahead

Three significant changes are on the horizon that will impact almost all individuals receiving services from the Developmental Disabilities Administration (DDA).

Although the changes do not go begin to go into effect until next spring and continue on through 2017, we want everyone to have a good understanding of what they mean and why they're happening.

The changes will affect the following services and programs:
  • Individual & Family Services
  • Home & Community Based Services (HCBS)
  • Personal Care 

If your son or daughter receives services (or is waiting to receive services) through any of these pathways, be sure to read Changes Ahead at the Informing Families, Building Trust website.