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.

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. 

 



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

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.

Ten Tips for Visiting my Family by Rachel Nemhauser

In a few short weeks my older son Isaac will be having a Bar Mitzvah, and I’m kvelling. (Yiddish; bursting with pride). He’s worked for years to prepare, and, like generations ahead of him, will become a man in the eyes of our community.  Simultaneously, and not coincidentally, the Nemhauser family and Bellevue, Washington will be invaded!  Almost one hundred loved ones from around the country will travel to Bellevue to celebrate this incredible occasion with us, to show their love and support of Isaac, and to be together as a family on this special day.

I am overwhelmed with gratitude and excitement that so many people who mean so much to us are putting in an incredible effort to fly across the country to be with us.  I’m moved and can’t stop smiling with anticipation.  I’d be lying though if I said there wasn’t a degree of trepidation mixed in with the anticipation.  While Isaac is undeniably the main event, I have little doubt that Nate will do his best to provide the side show entertainment all weekend.

Having visitors can be tricky with Nate around.  Nate’s a little slow to warm up to visitors. If you stop by, you can count on being told upon arrival, “My house!  Leave!" He doesn’t bother himself trying to put his best foot forward, and really isn’t all that interested in a weekend dedicated to lavishing his older brother with attention.  Instead of demonstrating his growing vocabulary, emerging social skills, successful toilet training and full-body hugs, he’ll likely choose to scream loudly and often, refuse to greet visitors, and amp up the obstinacy he’s so good at!

For many of us raising children with disabilities, welcoming people into our homes can be stressful.  There is nowhere to hide the worst behaviors and deficits, and everyone can see the furniture he’s ruined (or is that just me?).  So, in preparation for our most welcomed and highly anticipated visitors, following are some tips for visiting our family.  I believe they can be applied to visiting the homes of other families with children with disabilities. 

1)      Focus on skills, not deficits.  When visiting our home, you will definitely notice Nate demonstrating inappropriate and unacceptable behaviors.  He will hit his mom.  He will scream when he doesn’t get his way.  He will be spoon-fed instead of feeding himself.  Keep in mind though, that for every “bad” behavior you see, there are other skills we’ve been tirelessly chipping away at.  Did you notice he’s toilet trained? He says please and thank you?  He most likely won’t undress in front of visitors? We work hard every day to improve, and we also have become very good at picking our battles!  Most importantly, we’re so incredibly proud of how far he’s come.  (I’m kvelling again…) 

2)      Transitions can be hard.  For us, it happens Every. Single. Time.  Nate doesn’t stop what he’s doing and move on to the next activity without some protest.  Sometimes it’s a little yell, and sometimes he’ll make your ears ring with his scream.  We almost never decide to NOT switch activities.  His protest doesn’t mean he doesn’t want to do what’s next, and it doesn’t mean he’ll protest the whole time.  Just push through, wait five minutes and he’ll recover. Ear plugs are optional but recommended.

3)     Remember that he understands more than he speaks.  Nate listens and understands what you’re saying.  His feelings can get hurt, and he can form ideas about himself based on what he hears people say about him.  Please be thoughtful about his feelings and self-esteem. Of course, he’s a fantastic secret-keeper so you can confide in him and know with confidence that his lips are sealed.

4)     Let him warm up slowly. Start with a wave from across the room, or maybe a high five.  Nate may not remember you from last time he saw you, and might be feeling more stress about your visit than he can express or understand.  Give him time and lots of chances. Be interested in his toys, his room, his favorite TV show, his xbox and his dog.  He’ll come around.

5)     Don’t take it personally.  Nate will probably tell you to leave, and maybe even to shut up while you visit.  He might turn his back on you and refuse to acknowledge your presence.  Please, please, please don’t feel hurt.  He isn’t intentionally trying to hurt your feelings, and is just expressing his discomfort in the only way he knows how.

6)      Ask lots of questions.  We understand that Nate is different than any other kid you know, and that much of what he does appears confusing or weird. It’s amazing though that once you know Nate better, a lot of his behaviors and language are more understandable. Ask us questions and we will do our best to answer them.  If you ask a question we’re not comfortable answering, we’ll let you know.  Mostly though, we’d love to tell you what we’re working on, which methods we’ve found helpful (and which we have found completely ineffective), and our thoughts about Nate’s future.  In fact, he’s one of our favorite topics!

7)      Give siblings all the attention they deserve.  While Nate’s antics can take up more than his share of the attention, remember that Isaac is here and deserves the spotlight too.  He’s quieter about it, and will probably not color on any walls or wet his pants, but he needs and deserves to have his family show equal interest in his goals, challenges and plans for the future. Just like Nate, he is an incredible kid.  In fact, show interest in his xbox and his dog and you’ll make him very happy too!

8)      Watch how we interact and do what we do.  The best way to learn how to be with Nate is to watch his family.  Mom, Dad and Isaac are Nate experts and know what works.  We know when to be firm, when to use distraction, when to offer a reward, and when to resort to a time out. Most everything we do is thoughtful and intentional, and done with years of experience behind it.  Be wary of offering suggestions, especially in the middle of a stressful situation.  It’s safe to assume we’ve tried everything (twice) and have zeroed in on what does and doesn’t work for us.

9)      Jump in to help. Don’t wait to be asked.  If Nate needs to take a walk during a long sit-down dinner, offer to take him.  If he wants company watching Justice League, sit with him.  If it’s bed time, offer to read him a story.  It’s not always easy for Nate’s parents to ask for help, but it’s usually very much appreciated.

10)   Love him for exactly who he is.  Nate is silly, loud, inconsiderate, affectionate, extremely messy and a total handful.  He can make you laugh, and then minutes later cause you to pull your hair out in frustration. He will drop a rock in your drink when you’re about to take a sip and tell you to shut up when you compliment his t-shirt. Love him in spite of it.  No, better yet, love him because of it.  Take time to get to know him and learn what makes him such an incredible, complex, multi-dimensional person.  Nate is one of our never-ending sources of love and happiness, and we are so overjoyed to share him with you.

 

 

Are you the parent of a son or daughter with a disability? What other tips would you share with people visiting your home? What do you wish everyone knew before walking through your door? We'd love to hear from you!