What is Self-Direction and is it Right for Me? from MAD Fall 2012
What is Self-Direction and is it Right for Me?
By Carmel Garvin Hearn
Carmine Vara leads a very active life. He has a job at Stone Mountain Park and enjoys spending time with his girlfriend, Amanda. He lives independently with a roommate and plans daily activities with his direct support professional, Nyck. He is in charge of his life and the people who provide support to him because he has chosen to lead a self-directed life.
Self-direction, also known as consumer-direction, is an alternative to the traditional service system in which a person receives support through agencies or in an institutional setting. Self-directors make their own choices in guiding their own lives. They personally select the people they want to provide the supports they need. In turn, those direct support professionals are employed directly by and accountable to the person they're supporting. They are expected to listen and respect those individuals' voices.
Self-direction gives a person with a disability the choice to exercise control in planning for and running his or her own life. While more and more people are moving into self-direction, it may not be for everyone because it does require more responsibility and more work by the individual, along with immediate family members and sometimes, a larger network of friends and extended family members.
"Self-direction is right in line with the Georgia Council on Developmental Disabilities' (GCDD) mission, vision and values that people with developmental disabilities should have self-determined, inclusive, integrated productive lives in the community," said Deputy Director Pat Nobbie, PhD. "Not everybody can choose self-direction, but for families who can, we provide our full support."
Vara began self-directing with the assistance of his immediate family and a larger support group known as a Microboard.
"The best part about it is that I get to hire my own staff," said Vara. "Working with Nyck is a pleasure."
Nyck Crumbly has been Vara's day direct support professional for the past four years. "It's always fun and interesting to find out what we're going to do for the day," he explained. "I like self-direction because it allows us more freedom. We can do whatever Carmine wants to do instead of what the head of the group home thinks Carmine wants to do."
For example, the two planned and took a week-long vacation to the Dollywood® Theme Park in Tennessee over the summer, an opportunity that both attribute to Vara's choice to self-direct.
His road to self-direction began when Vara transitioned out of the school system and moved into a group home. Not long after, his family realized the situation was not working out for him.
"He became complacent," explained his mother, Nancy Vara. "He was not given reliable transportation to go to work or for any activity he wanted to do outside the group."
Vara brought her son home but soon discovered that becoming a primary caregiver, providing round-the-clock care for a young man with developmental disabilities who needed a lot of support, was too much to take on by herself.
"I realized I needed to embrace people I trusted, who knew Carmine and what it takes to support him," she explained. "I worried what might happen to my son if something happened to me."
That's when she learned about Microboards, which are small, nonprofit organizations that provide formalized circles of support for individuals with a disability.
"I had a meeting at my house and invited people I would have invited for an event like Thanksgiving, Christmas or Carmine's birthday," explained Vara. "I asked if they would be interested in supporting Carmine and me. About a dozen people raised their hands."
That's how Vara helped her son begin living a self-directed life with a support network that will last his entire life. Not only did she establish a Microboard for Carmine, she decided to help other people develop their own Microboards.
"I formed the Georgia Microboards Association to provide training and ongoing assistance to Microboards," she explained. "We are committed to providing continued support to the individual and to the development of relationships between members that will last a lifetime."
The Georgia Microboards Association also provides technical advice, sample documents, organizational charts and examples of what is required at each step of the development process. It strives to educate all interested parties and helps association members connect with one another, sharing ideas and solving problems Both those who self-direct or those who use traditional services may establish a Microboard. Just like self-direction, it is a tool that can be used as desired or needed.
Todd Copper established his Microboard six years ago and made the decision to begin self-directing two years later. He lives independently with a roommate, Bobby Davis, who has also been Copper's full-time caregiver for the past two years.
"I like being self-directed. I have more freedom," explained Copper. "Bobby and I enjoy going out to eat, to movies and Atlanta Braves games."
Prior to self-directing, Copper's support was provided by agencies that might send one person for transportation, another for personal care and so forth. Since becoming self-directed, he pays support directly to one provider who lives with him full-time.
"Living with Todd is like living with a celebrity," said Davis. "He has a huge network of friends in this area." Davis provides transportation and personal care. But the two also do things together as friends and roommates, such as walking to the neighborhood pool (Copper using an electric-powered chair) or taking MARTA to see a Braves game.
Having been in a near-drowning accident at the age of two and living with Cerebral palsy since, Copper successfully transitioned from special education classes to mainstream schools, graduating from Dunwoody High School in 1995. He then worked as a vendor at the 1996 Olympics and as a Salvation Army bell ringer before finding his dream job – taking tickets at the neighborhood movie theater.
"Lots of people knew me," he remarked. "At first I was happy having a regular job, but as time went on I made friends with the customers."
Copper had to practice tearing tickets until he could perform the task fast enough to get hired. He held the position, which included medical benefits and a 401K plan, for 15 years, but was recently laid off. Like many other people in America today, he finds himself out looking for a job in a market where it is very tough to find work.
"A lot of people would come to the theater early just to see Todd," said his mother, Becky Copper. "They would stop and chat and ask him to recommend a movie for them."
That gave Copper an idea to start a website where he could post his movie reviews. Although he no longer has free access to films, he hopes to continue sharing his love for movies with his former customers.
"If you want to pick a good movie to see, go to www.toddsreeldeal.com and locate the best choice for the occasion," he advised. Copper uses a laptop with a big screen monitor furnished by his seven-member Microboard to update his movie blog.
"This is my support group of friends that care, guide, balance, dream, discover, plan, listen, grow and celebrate with me," Copper said about his Microboard. "They make sure life rolls along smoothly for me. I can share good news as well as my troubles with all of them."
The Microboard has also helped him establish a bank account and go on outings and trips, including a cruise to Mexico.
"If he needs help with something, he can call on the Microboard," observed Becky Copper. "When he wanted to replace the carpet in his apartment with hard surface flooring, the Microboard got the best price and found somebody to put it in. This was a hurdle that I might not have time to do. What an accomplishment!"
The Roots of Self-Direction
Georgia's service delivery system for people with disabilities began moving toward a self-directed system five years ago when several national experts and key leadership from state agencies involved in funding services for people with disabilities came together, including the Department of Community Health (DCH), the Department of Human Resources (DHR) and the Governor's
Office of Planning and Budget. The DHR, in partnership with the DCH, received a three-year Independence Plus Initiative grant from the federal Centers for Medicare and Medicaid Services (CMS) to design and develop a self-directed Medicaid waiver program. Additionally, GCDD partnered with the Office of Developmental Disabilities and the Center for Self-Determination to train on the implementation of self-direction through the Mental Retardation Waiver Program amendment.*(Note: DHR is now known as the Department of Human Services (DHS) and the Department of Behavioral Health and Developmental Disabilities (DBHDD); the Independence Plus Grant is now under DBHDD; the Mental Retardation Waiver Program is now known as NOW and COMP Waivers.) Self-advocates and family members were an integral part of this training. Today, about 1,600 people with developmental disabilities exercise some form of self-direction.
"I had been thinking about it for a while, but I am an extremely busy person," explained Nobbie. In addition to her duties at GCDD, she is also the mother of several adult children including Mia, who has a developmental
disability. "I thought that's one thing I don't need to take on."
But then an incident occurred which would have required Mia to move away from a family with whom she had been living for some time. That, said Nobbie, would have been devastating to Mia. So, she began to explore options and decided to try self-direction.
"Everything has been fine," Nobbie continued, describing Mia's transition to self-direction. "You hire your own staff but go through a fiscal agent to pay them. Sometimes, as we did, you already have people on board. You just change the method of payment."
Those who self-direct one or more support services must choose an authorized fiscal agent to provide payroll administration and other expenses paid through the funding allocation.
There are currently three fiscal agents authorized to operate in Georgia:
• Acumen Fiscal Agent
• Administrative Services, Inc.
• Public Partnerships, LLC
"The fiscal agent is not only familiar with all regulations having to do with payroll, such as workers compensation, but also frees the family or individual from being liable for complying with laws they may not understand," said Doris Johnson, MPP, the DD (Developmental Disabilities) Program Administrator for the Georgia Department of Behavioral Health, Division of Developmental Disabilities (DBHDD). "Having a fiscal agent lightens the burden of that responsibility for families."
Johnson added that anyone who receives any of these waivers is eligible to transition to self-direction:
• Community Care Services Program (CCSP)
• Independent Care Waiver Program (ICWP)
• New Options Waiver (NOW)
• Mental Retardation Waiver Program (MRWP)
"If an individual expresses an interest in self-direction, they simply need to contact their support coordinator through one of our six regional offices, who will complete the paperwork to begin the process," Johnson continued. "You can get started over the phone, and if you're not able to come to us, our staff will come to you."
Although only about 1,600 of the 12,000 individuals who currently receive waivers through DBHDD are self-directing, the system has recently been upgraded to make it less cumbersome and a more attractive option. Johnson expects that up to 6,000 individuals will be self-directing within the next four years.
The Self-Directed Conference - A First for Georgia
A number of the participating agencies, including GCDD, DBHDD, the Georgia Advocacy Office (GAO) and Parent to Parent will present Georgia's first self-directed conference on October 19 at the Macon Convention Center.
"Georgia Microboards Association is going to be one of the participants and anyone who has any self-directed services will be invited to attend," said Nancy Vara. "We'll have breakout sessions on finding staff, support coordinators, putting a budget together, employment tips and more."
Although a number of training services on self-directing are available to individuals and families, this is the first conference that brings people together to share information with each other.
GCDD has several resources on its website (GCDD.org) to help people get a better understanding of the self-direction process.
According to GCDD's Guide for Self-Directing NOW and COMP Waiver Services, self-directing individuals have more control over their services, their budget and ultimately their life and the way it is supported. If a family decides they no longer want to self-direct, they can opt out and go back to traditional services.
And what does Carmine Vara say to others who might be considering self-direction? "I say to anyone who wants to do this to do it! It feels good to be my own boss."
