Birthday Boy

This crazy kid is 10 today. He can't read yet and talking is still hard for him, but he can tell me he loves me and gives incredible hugs. He is my dream come true that I never even knew I wanted.

Supported Decision-Making

Note: The following information is intended to give an overview of alternatives to guardianship in Washington State. It is for educational purposes only and is not a substitute for legal advice. For advice on making legal decisions, please seek the assistance of an attorney.  

Many parents of children with intellectual or other developmental disabilities assume that they will need to obtain legal guardianship when their child turns 18; however, while there are some cases where obtaining legal guardianship is warranted, it is often not necessary. Not only that, but Washington state’s guardianship law requires considering alternatives to guardianship first.

Begin thinking about supported decision-making options by making a list of your concerns. Is money management an issue? Self-care? Health risks? Exploitation? Write down all of the areas that pose a risk to your son or daughter's health and safety, and consider one or more of the following options as a way to address those concerns:

Representative Payee (Financial)

A representative payee is an individual or organization appointed by a government agency (such as SSA) to receive government benefits on behalf of an individual who cannot manage his/her money.

When friends or family are not able to serve as payees, Social Security looks for qualified organizations to be representative payees.

The payee’s responsibility is to use the benefits to pay for the current and foreseeable needs of the beneficiary and properly save any benefits not currently needed.

If you believe that your son or daughter is incapable of managing or directing the management of his or her Social Security or SSI benefits, call 1-800-772-1213 (TTY 1-800-325-0778) to request an appointment to discuss your concerns. 

Special Needs Trust (Financial)

Special needs trusts, such as the Developmental Disabilities Endowment Trust Fund, provide oversight and management of money held in the trust.

A special needs trust ensures that the individual’s resources are spent for the benefit of the individual.

Power of Attorney (Financial and Medical)

A power of attorney authorizes an individual to designate others to advocate on his/her behalf, including making medical and/or financial decisions.

Unlike a guardianship (authority from the court) or a payeeship (authority from the funding source), a power of attorney is given authority by the individual.

An individual can sign a valid power of attorney document if s/he has the capacity to understand what the document says.

Informed Consent (Medical)

To give informed consent for medical treatment, a person must have the mental capacity to understand the choices and make the decision.

If a person cannot make health care decisions by reason of mental incapacity, Washington law provides a way for someone else to make health care decisions on his or her behalf.

As with all other decisions, it’s important to always strive to give the individual the most decision-making authority possible; and, when not possible, to make decisions that the individual would choose for him or herself.

The following persons can provide informed consent on behalf of the individual in the following order:

• The guardian or parent if the person is under age 18;
• An individual to whom the person has given a durable power of attorney, including the authority to decide health care issues;
• Spouse;
• Adult children (over age 18);
• Parents;
• Adult brothers and sisters.

Vulnerable Adult Protection Order (Protection)

A Vulnerable Adult Protection Order (VAPO) can protect an adult with a mental or physical disability who is victimized by abandonment, abuse or financial exploitation. You can obtain a VAPO from the court even when the individual is unable or unwilling to seek help.

An example of when a Vulnerable Adult Protection Order may be a good alternative to guardianship is if an interloper "moves in" with a person with a disability and starts taking their food and money. In a case like that, a VAPO may provide quick access to orders protecting him/her from further abuse or exploitation, even if the individual is unwilling to seek help. Adult Protective Services also may assist.

Mandatory forms to use for these cases are on the court website.

For a printable fact sheet of Supported Decision-Making options, visit our Informing Families Fact Sheet page.

Still interested in guardianship?
Visit Informing Families, Building Trust to learn more.


ADDITIONAL RESOURCES

Disability Rights Washington

Washington LawHelp

Washington Courts Guardianship Training

Wings for Autism

The Arc of King County, in collaboration with The Port of Seattle, Alaska Airlines and Transportation Security Administration (TSA), will be hosting its second Wings for Autism® at Seattle-Tacoma International Airport on September 27th, 2014.

Wings for Autism® is an airport “rehearsal” specially designed for individuals with autism spectrum disorders, their families and aviation professionals. Originated by the Charles River Center, a local chapter of The Arc, Wings for Autism^® is designed for individuals with autism spectrum disorders, their families and aviation professionals. The program provides families with the opportunity to practice entering the airport, obtaining boarding passes, going through security, and boarding a plane.

Click here to register.

Recruiting Family Stories

As a follow up to “The Waiting Game” and the “No Paid Services Caseload” campaigns, we are planning to publish a booklet of stories that show people who have received services from DDA as a result of improved funding and policies in recent years.

We want to show the Legislature that the money they have appropriated for the unserved (in the 2013 and 2014 legislative sessions) is actually helping many people in a very real way all over the state.

An additional benefit will be to show the variety of routes that were used to gain services, such as:

• Calls to the DDA hotline;
• Help from a peer support network or organization (Arc, Parent/Family Coalition, Parent to Parent, Self-Advocacy group etc.);
• Connection to a case resource manager.

This will give us valuable information about those successful processes and routes that we can use to educate and help more people.  If they now receive MPC, but still need respite or another DD-specific service, hopefully that will be information we can also use.
If you or someone you know has moved from the No Paid Services caseload to paid services within the past few years, and you would like to share your story for this campaing, please contact Betsy McAlister at: dbmcharger(at)frontier(dot)com. Parents can remain anonymous, but we would hope to be able to have representative stories from as many parts of the state as possible.

This should be an exciting opportunity to showcase our advocacy and continue to support families and individuals with intellectual and developmental disabilities.

IEP Parent Partners: Fostering Positive Relationships Between Families and Schools

We love to hear what families are doing to create a better community and improved supports for their children with disabilities...and we especially love to hear when it's working.

When happy rumbles about a program to help families navigate the IEP process started rolling in from Snohomish County, our ears perked up.

While there are many good programs and supports in place to help families advocate for their child when problems emerge during the IEP process, The Arc of Snohomish County looked around and asked: What if we help parents before there is a problem? The answer to this question became the genesis for the IEP Parent Partner Program.

The fledgling program seeks to help families, particularly those facing their child's first IEP, understand the IEP process, what's required, and what to expect. Families are paired with a Parent Partner who acts as a guide, helping to empower families with knowledge and confidence in their role. There's a training component to to program, plus one-on-one support that takes place before, during, and after the IEP meeting.

"It's not advocacy with a capital A," says Jamie Coonts, Program Director for The Arc of Snohomish County. "There are other programs out there that know about the law. We're more in a collaboration role [between families and schools]."

Coonts explains that a lot of problems arise due from lack of communication and the parent feeling that their input isn't valued. Often, the parent goes into the IEP meeting with a mental list of things they want to see and those things are specific services.

"We get them to think about the most important things to include in the IEP and to really think about why those things are important."

The goal is to help families identify the underlying needs, rather than specific solutions, so that the team can brainstorm how to meet those needs. The approach inspires collaboration and reduces the risk of families feeling dismissed.

Parent Partners also encourage families to give input into the IEP draft that the school works on prior to a meeting. It's an action that not only helps parents clarify their needs, it also strengthens the relationship between the parent and professional team members around the table. According to Coonts, the practice is gaining a lot of traction with schools. One school district liked the the approach so much, it asked for permission to share the worksheet for all families of students with IEPs.

In keeping with the intent of the program to be a navigator, the role of the Parent Partner during the meeting is specifically defined. "At the meeting, their primary role is notetaker," says Coonts. "Really, the only time they should be speaking up is if something needs to be clarified. They are not there to say, I think this... or to participate." After the meeting, the Partner helps debrief and "decompress" with the parent to assess how they feel and if any follow up steps might be in order to clarify what took place.

Coonts is encouraged by the response to the program so far and hopes to see it continue. "It's evolving," she says. "I think it's going to be a really good thing."

We think so too!

To learn more about IEP Parent Partner Program, contact Jamie Coonts at The Arc of Snohomish County.

Inclusion Is....

This letter came home in Nate's backpack on the last day of school and is from a student in his class who I've never met.  I'm speechless.

Summer Vacation is an Oxymoron by Rachel Nemhauser

In 24 hours my kids will officially be on Summer Vacation and it's fair to say that I'm officially starting to panic.

I know, I know. Summer Vacation means sunny weather, popsicles, lazy days, trips to the beach and a reprieve from nightly homework battles. It means slower mornings and long, balmy evenings in the backyard. Spontaneous weekend getaways and quality family time.  Suntans.  Fruity drinks. Freckly noses. I get it, I really do.  I used to love summer and look forward to it all year long.  Now I would say I don't so much "look forward to it" as "count down the minutes till school ends in a frantic combination of dread and denial'.

Ok, that sounds dramatic, but it also pretty accurately describes how I feel right now. 

In my house, Summer Vacation is an oxymoron. There is no vacationing for me over the summer.  Instead, there is a moderately tyrannical but incredibly charming 9 year old with developmental disabilities to supervise, entertain and support for the next several months (along with his older brother Isaac).  After many months of successful teamwork with the school I can't help but even feel a secret sense of abandonment when we go our separate ways in June. I'm aware it's irrational, but I thought we were in this together!

For me, Summer Vacation means my house is under siege as Nate fills his long, lazy days finding new ways to "decorate".  Even short periods of quiet mean trouble is brewing and must be investigated. Summer means that although we have twice as many televisions as we do children, my boys still have battles over viewing choices.  With one of the  battle participants being largely nonverbal, these fights get loud, shrieky and physical almost immediately.  Summer means trying to fill long days and weeks with things to do when playdates, birthday invitations and sleepovers are almost nonexistent.  My kids are always around, usually bored, and often causing trouble.

I think what it really comes down to is that summer means spending a lot of time with my kids, and that's not easy. Summer reminds me that I always envisioned wanting to spend loads of quality time with my children, and that my reality hasn't really met my expectations.  I love my time with them, but I also love when they go away for a little while every day.  Nate's disability ups the ante, making every day he's not in school a little more intense, laborious and frustrating than you'd expect.  Every well  meaning mother who tells me how much they look forward to summertime unintentionally makes it a little worse by reminding me that we're different.

The good news is that the first day of school is only a few months away.  Also, Nate looks exceptionally cute in a bathing suit and sun hat, and will still squeal unselfconsciously while water laps on his toes. That might not get me through the whole summer, but it definitely brightens any day.  I will spend my summer looking for all the ways my kids make me smile, and  I will try to steal some actual vacation when I get a chance.  Mostly, though, I'll be counting down the days till September, when school starts again, panic dissipates, and I reclaim my peaceful daytime reprieve.

Have a great summer, and stay strong!