Marking Time - Still

Marking

Time – Still!

BY BILL DONOHUE

Three years ago, an organization was formed with the hashtag, “2Long2Wait!” It marked the decades that many have waited for disability services. The Registry of Unmet Needs (RUN) was created by the North Carolina legislature to log those seeking Home and Community Based services for Intellectual and Developmental Disabilities (I/DD). The number of North Carolina citizens waiting exceeds 15,000 and is rapidly growing.

The stalled wait “is a can being kicked down the road, year after year,” says Deborah Woolard and Sarah Potter, parent advocates whose sons know the challenge better than most.

“Moms know this fight, and we are smart to draft behind them,” said Bill Donohue, Woolard’s husband and a shared founder of their North Carolina Waiver Action Team. “Real change in services for our children always seems to emerge at kitchen tables where the mothers’ networks are the real engines and passion for movement.”

Mandated by federal law, the HBCS services are designed to keep citizens from institutions, create viable work opportunities and protect them from community isolation. North Carolina is sadly behind the nation in all regards.

Forsyth County, however, is about to see some movement. Partners, the new Managed Care Organization replacing Cardinal Innovations, recently announced new Medicaid Waivers allocations. Supported by local leadership from Senator Joyce Krawiec, 1,000 service “slots” for North Carolina and 34 to Forsyth County are being awarded, ending a five-year county drought. “We are thrilled that hope is arriving for not only 34 individuals and their families, but the other 750 in our county who wait behind them,” said Woolard.

Her son, Jeremy Donohue, was one of the lucky ones, signing up for the waiver before the turn of the century. He’s been able to demonstrate the power of the waiver and HBCS services, enrolling in college, living and working in the community, and embracing recreation, worship and services largely unavailable to most with I/DD. A huge boost for someone with a measured IQ under 50.

Matt Potter, already has his college degree from Wake Forest University, but after a 13-year wait, yearns for the same opportunity – and dignity – of the service array. With cerebral palsy, he needs transportation, housing support and a host of other services provided by the waiver to fully express his potential, but is among the 750 in Forsyth County who wait for the legislature to match by 1/3 a federal allocation of 2/3. The average individual award is approximately $55,000; compared to institutional costs three and four times that amount.

“My parents and their natural supports will not always be here for me,” says Matt, “and the wait for all of us is so far behind most states who more than recognize the need.”

Sarah and Deborah have taken the lead to make a difference beyond the county borders with their website (ncwaiveractionteam.com). Following close behind are shared leadership teams from the North Carolina Council for Developmental Disability (NCCDD) and the Leadership Alliance for Neuro-Disability (LAND). Partnering with other statewide agencies, their collective voices grow the reality that change is in the air.

Their work is gaining traction. From their kitchen table networks and website, communities are engaging and policymakers are seeing the data and stories that demonstrate family need and economic impact. Thanks to recent court decisions and these growing voices, light is again shining on the 1998 Olmsted Act requiring North Carolina to de-institutionalize its restrictive facilities for those with disabilities. The legislative history of cankicking is in full view as the burgeoning wait list “runs” the opposite direction.

The new “slots” are a boost for the county, but the “can” needs more than a kick if it is to keep up with the desperate need.

Preventing the Summer Slide

Creating a Summer Reading Challenge for Your Child

BY MEGAN TAYLOR

Researchers have found that children can lose up to two months of reading skills during the summer months if they don’t continue to read. It is also recommended that kids read a certain number of books over the summer depending on their age. Researchers with Scholastic state that about 19 books are recommended for children ages six to eight, nine for ages nine to eleven, six among ages 12 to 14 and two among ages 15 to 17. However, it is encouraged for kids to read above the suggested limit. The catch? Not many kids are avid readers. Oftentimes, they can find books boring and unappealing. As for other children, reading can be a favorite hobby, and they devour book after book. No matter what type of reader your child is, the most important thing is to keep them reading over the summer, and it also helps to make reading fun. One of the many things I have learned from teaching is that kids love challenges, so why not turn reading into a summer challenge and help your children maintain their reading skills?

First, get organized. Create a list of books they will read during the challenge. Discuss with your children what type of books they would like to read and how many they need to read. Younger children may need some assistance with the challenge and maintaining the reading plan. Once you have this list, write it down on paper or digitally. The list can be created before the challenge begins with all of the books planned to read written on it and then crossed off when read. Another way to use the list is to create it as the challenge goes on. After a book is read, it is added to the list. Some parents and guardians choose to use a poster board with columns that include all the weeks of summer. Then, they add the book titles to the list once read. You can also include decorations, such as gold stars and stickers, to celebrate your child’s achievements as he or she continues reading. Don’t forget about a fun and creative name for the challenge that will also entice your child. Lastly, part of getting organized is thinking about how you are going to obtain the books. Will you be going to the library? Reading the ones you already have at home or purchasing specific titles?

Next, decide on a goal for the challenge. Will you determine the challenge is met when a certain number of books have been read? Will you give points per book and have your child earn a certain number of books? For example, a picture book is five points, and a chapter book could be 10 points. This will all depend on what works best for your children and their ages. Part of developing an engaged reader is making sure he or she is challenged and not defeated. The goal should be realistic and achievable for your child.

Once everything is agreed upon and organized for the challenge, let the reading begin. Refer to the challenge each day and set aside time for daily reading. Celebrate the milestones along the way, as well. Make it a big deal when your child finishes a book. Honoring all achievements will build motivation and commitment in him or her. While rewarding the end goal is more important, it is valuable to give smaller incentives along the way, such as weekly, per book, etc. Take it a step further and create a treasure box of prizes for the milestones. Then, celebrate the ending and accomplishment of the challenge with a big prize. Don’t forget to take pictures. This can be a huge achievement for a child and should be honored as such.

Summer reading challenges are great ways to keep kids reading when they are out of school. The key to making the challenge successful is input from the child. They need to be active members and planners of the challenge. Let them choose the books and prizes with your guidance. If they need help, be available for them. These challenges are fun ways to make summer memories while learning new things. Who knows – your family may now have a new summer tradition. Happy Reading!