Transitioning children with developmental disabilities from a home environment into a classroom environment can be stressful for both children and parents. Many young children with special needs and their parents have not been separated for extended periods of time, so they may not know how to handle the separation positively. Some separation anxiety is normal, but learning how to cope and realize that separation is a normal part of life will help both parent and child adjust.
United Services’ Early Intervention program was designed for children ages 2 to 3 who are enrolled in First Steps and are ready for a classroom environment. Parents are able to see their child be successful at school and Early Intervention makes the transition to school district services much easier.
United Services Provides Needed Services to St. Charles County
Founded in 1975, United Services is a non-profit organization based in St. Charles County, Missouri. United Services is nationally accredited by the National Association for the Education of Young Children, and provides developmental learning and pediatric therapy to children with special needs. To date, United Services serves approximately 1,000 children annually.
Once a child reaches 2 or 3 years old, they are ready to enter a more diverse environment outside of the home, namely classrooms. This stage of development is where United Services’ Early Intervention program supplements the First Steps program. First Steps helps children with developmental disabilities from birth to the age of 3 reach important developmental skills such as:
With United Services’ knowledge and expertise in working with children with disabilities, families are provided with the appropriate support that would not be available in other community settings. Families of children with developmental disabilities can come together, share experiences, and have the sense of a united community.
Early Intervention Selects Compatible Classrooms for Each Child
Selecting a compatible classroom for children with disabilities is very important. Adapting to a new environment away from the comfort of the home and parents can be challenging. An appropriate classroom environment for a child with developmental disabilities has:
- Reasonable class size
- Predictable daily schedule
- Opportunities to participate
To determine the most appropriate classroom environment for each individual child, the family is referred to the program, and a social worker conducts a home visit to meet the family. Once the most appropriate classroom is selected based off the child’s needs, they will attend school two days a week while still keeping their First Steps therapy visits.
Early Intervention Supplements First Steps
At this stage of development, many of the children in First Steps qualify for services through the school district, and Early Intervention allows First Steps children to experience a classroom environment for the first time. Early Intervention is designed to take what a child is learning at home and in therapy and apply it to a classroom setting.
The program allows for children with disabilities to take advantage of learning how to adapt to new situations and learn new skills like socializing and cooperating with others. By continuing with their First Steps therapy, special needs children can successfully navigate through new environments by applying what they have learned in both programs.
A Diverse Staff Provides Classroom Support
In each classroom, there is a special education teacher and a minimum of two teacher assistants. There is also a speech therapist and an occupational therapist to complete and support each classroom team. All are supervised by a social worker.
The reason so many staff members are present for each classroom is because like many children their age, children with disabilities often have difficulties adapting to new environments and situations. Staff at United Services is there to help the child adapt and fully participate in the classroom. They can also help educate the teacher and other students about having a child with special needs in the classroom.
Successful Classroom Adaptation
One such child was a little boy named Alex* who entered his new school’s early intervention group at the age of 26 months. At home, he spent most of his day watching television and his family struggled to get him to follow directions without incentive. Often, they would just give in to his demands just to get him to stop crying.
When Alex first arrived at the early intervention group, his high levels of anxiety initially caused him to cry and crawl under a table. Through Early Intervention?s support in the classroom environment Alex was able to work through his anxiety. 6 months after he arrived, he had successfully transitioned into a larger classroom environment and began playing and interacting with his peers. Since then, his language skills have also increased, and he is now able to follow directions without needing incentive.
DDRB Supports Local Programs
The Early Intervention Program by United Services is funded with help from the United Way and the Developmental Disabilities Resource Board (DDRB). Without the help of programs like DDRB, United Services would not be able to make this program available to the children and families of the St. Charles County area.
*Names have been changed to protect the privacy of participants.
Across the nation March is recognized as Developmental Disabilities Awareness Month.
Every year a group of Missouri organizations (Missouri Association of County Developmental Disability Services, the Arc of Missouri, and People
First of Missouri) along with Missouri Developmental Disabilities Council (MoDD Council) produce a poster and bookmark celebrating inclusion of people with developmental disabilities in everyday life. Posters and bookmarks are for display by schools, libraries, and other community organizations throughout the state.
For 2015, these groups sponsored an art contest for individuals with developmental disabilities to submit entries of an original design for selection of the state-wide theme.
Of the many entries received, the poster (pictured at right) by Ryan Zull of St. Peters, Missouri was selected as the winning entry.
“Ryan was able to create a strong, positive message with creative and visually pleasing graphics,” said Mary Sullivan-Thomas, co-sponsor with Missouri Association of County Developmental Disability Services. “Ryan’s message encompasses all ages and abilities, making it a universal message with staying power.”
Ryan, who has an autism spectrum diagnosis, says he got the super hero inspiration from his sons and wanted to visually incorporate that concept in his message. “We can all relate to a super hero,” said Ryan. “They’ve got certain things they’re really good at and they don’t let how other’s view them affect what they achieve.”
Ryan is a life long resident of St. Charles County where he lives with his fiancée and three sons. Currently, Ryan is a full-time student at the University of Missouri—St. Louis where he’s studying Art History and Studio Art.
To order posters and bookmarks or to inquire about additional outreach efforts, contact DDRB Community Resource Specialist Karen Craven at 636-939-3351, extension 3106 or by email at email@example.com.
Imagine that you have discovered that your loved one has a developmental disability. You want to learn not only what it is and how it will affect you and your loved one’s lives, but how to effectively and positively cope with it. So you go to your local library to find resources that can help you.
Unfortunately, an especially promising title you had your heart set on is currently only available in bookstores. This lack of information makes you feel understandably frustrated. Why should you, or anyone for that matter, be expected to pay money for every resource when your new life already has additional financial expenses?
This is where The Developmental Disabilities Resource Board’s (DDRB) partnership with the local St. Charles City-County Library District comes in. With such partnerships, libraries can update their resources and make information freely available to those who need it. In doing so, it can help raise awareness and educate the public about the different types of developmental disabilities for free. Educating the public is another step closer to widespread understanding and acceptance of those with disabilities.
Free Access to Resources Leads to Education, Understanding & Acceptance
Having a family member with developmental disabilities comes with many social and financial hurdles. Therefore, information on developmental disabilities should be freely available and accessible to the public regardless of library size or funding. Libraries, particularly smaller libraries, do not always have the exact resources necessary for niches like developmental disabilities.
With free access, families of those with disabilities can teach themselves how to better care their loved ones. Just the same, those who are merely curious about developmental disabilities can freely look up the information and by doing so, educate themselves. With a better understanding of what developmental disabilities are, they can feel more comfortable around those with disabilities and accept those who are often deemed “different” than them.
Annually, the DDRB budgets up to $1,500 of reimbursement funds for the Library District to purchase these lending materials. In fiscal year 2014 the Library District purchased 63 new titles. In order to offer the materials at more than one branch, their purchases totaled 156 books and 15 DVD’s.
Without partnerships with organizations like the DDRB, library districts like St. Charles City-County would not be able to offer its free services to their communities at the capacity they do. Together, the DDRB and the St. Charles City-County Library District provides a valuable service to raise awareness and educate the public about developmental disabilities.
Community Participation Lets Libraries Know What Publications They Need
If there is no communication between the library and its community, the library cannot know what information is needed and at what capacity. With that in mind, individuals, families, and funded agencies are highly encouraged to make recommendations for developmental disability related publications that would be applicable to a broad audience. By communicating your needs to your local library, they can work on making that information available to you and those who need it.
Making a Request
Make a request by filling out the library’s form. The St. Charles Library District will contact you if this title is already available. simply contact the Library District or the DDRB for a list of publications that are currently unavailable. Library members can also request that they have first reservation of the publication prior to it being added to the general circulation.
Types of Media
By working together with the DDRB and gaining input from the community, the St. Charles City-County Library District is able to offer a wide variety of formats, such as:
These valuable resource materials can help improve the quality of life for individuals with developmental disabilities and their families by:
- Raising awareness
- Educating the public
Get Involved Today
The DDRB values its partnership with the St. Charles City-County Library District through the many resources and services that is offered to the citizens of St. Charles County. DDRB states, “Partnership enables us to better serve individuals with developmental disabilities in St. Charles County. Partnering allows us to maximize our resources and efforts to more effectively and efficiently meet the needs of our community.” The DDRB and St. Charles City-County Library District encourages you to visit your local library branch in person or online. Their friendly and knowledgeable staff will gladly assist you with whatever you may need.
Even though many people with complex learning or developmental disabilities are fairly independent, some have trouble implementing common social skills, understanding social rules, and finding comfort in interacting with others effectively. These obstacles include planning or participating in activities with others in the community.
Finding people with their common life experiences or having a reason to get out of the house can be difficult. To ease this process and promote easier access to social environments, Pathways to Independence has created a program component called “Social Focus” that provides people with disabilities the tools and support they need plan and attend social outings on their own.
PTI Continues an Important Legacy of Promoting Community Inclusion
For nearly thirty years, Pathways to Independence (PTI) has offered group activities to adults with learning and developmental disabilities. Their mission is to respond to the needs of those who often “slip through the cracks” because they are independent in many areas of their lives, but still need coaching to better grasp social nuances. By providing an open events calendar, participants can sign up for gatherings and activities such as:
- Baseball games
- Going to restaurants
- Touring museums
Subprogram Focuses on More Personal Relationships
However, for the past two years the organization has pursued an additional program component that promotes smaller group events and teaches specific social skills. When participants meet people they connect with on a more personal level, they can plan their own activities with PTI”s staff. These activities can lead to closer friendships between members because these events are invite-only. In addition, these smaller groups allow for more specific skill development in a variety of areas.
Qualified Staff Members Assist Participants When Needed
PTI’s program managers, Jessie and Rose, meet with participants when they want to plan an event of their choosing. Both staff members have experience in social work, giving them the resources to help participants when they need it and let them take the reins when they can. Since people with learning or developmental disabilities have differing levels of independence (some may live alone, drive, and/or work at least part time), their needs vary greatly. They may need assistance with:
- Planning activities
- Making reservations
- Finding transportation
- Reaching out to invite others
Miranda & Her Girl’s Day Lunch: A Social Focus Snapshot
One recent Social Focus event was started by Miranda, a woman in her mid-twenties with a form of autism. She had been participating in PTI’s larger events for two years before taking advantage of the opportunity to plan her own activity.
Miranda approached the PTI staff during events and at a one-on-one meeting to brainstorm ideas for a self-directed event. Once she decided on a “Girl’s Day,” which would include lunch, PTI staff worked with Miranda to:
- Choose people to invite
- Reach out to those people
- Make decisions about timing, transportation, and the event’s location
Miranda chose to invite Jane, her friend she had made through PTI . In addition, Social Focus encouraged her to invite a new PTI participant, Anna.
All three women went to lunch and Miranda learned that she and Anna had a lot in common. They exchanged contact information and since then they have developed a close friendship outside of Pathways to Independence.
Through this experience, Miranda overcame the anxiety that often comes with these types of events. In addition, she learned more about taking ownership of her own social needs, the process of planning, and the importance of following through with her commitments.
The Future of Social Focus
Many people in the St. Charles County may be unaware of the services Pathways to Independence has to offer because it has only branched out to St. Charles County over the past two years. “We couldn’t have expanded to St. Charles without DDRB,” says Jessie Steinberg, Program Manager at Pathways to Independence.
However, PTI wants to make its St. Charles County presence as strong as it is in St. Louis County and St. Louis City, where it is a more established program. This goal means they plan to reach more individuals with similar needs and desires to more fully interact in their community.
How You Can Get Involved
St. Charles County adults (18 and over) who meet PTI’s criteria with learning or developmental disabilities are invited to check out Pathways to Independence programs like Social Focus to see if it is a good fit for them. They have connections with individual case managers, the DDRB, and the St. Charles Coalition of Service Providers, or you can talk to them directly.
Partnership For Hope:
How Personal Attendant Care Builds Independence
By Karen Craven
DDRB Community Resource Specialist
Heather Michel is a typical young woman who wants to be in charge of her life. Her goals of independence have had its challenges because Heather has cerebral palsy and a seizure disorder. These conditions affect her mobility and require immediate assistance when she experiences a seizure. As a result, Heather is unable to access her community independently and unable to afford the services to do so.
Heather lives with her mother and her support dog, Clover, where they share a cluster home with Heather’s uncle, cousin and grandmother. Heather’s mom, Cheryl, works full time and provides the majority of Heather’s supports. These demands are becoming increasingly difficult for Cheryl to maintain, and while neither want to change their living arrangements, both acknowledge they need opportunities to engage in activities independent of one another.
Heather has the assistance of her support dog, and her electric wheelchair allows her the ability to access all areas of her home. However, the door to the garage presented a serious safety hazard for Heather to be home alone while her mother worked. With limited space to navigate her wheelchair to manually open the door, Heather had to slip her fingers between the door and the door frame at its hinges to swing the door open. On occasion this resulted in injury to Heather’s fingers, yet the critical issue was for Heather to be able to exit her home quickly and safely in the event of a fire or other emergency.
The Partnership for Hope Waiver has provided for the installation of an automatic door opener to address the safety hazard and Heather is receiving personal attendant services that help her access her community while developing independent living skills. When asked what the Partnership For Hope Waiver has done for her, Heather smiled and replied, “I’m now in charge of what I’m doing.”
Heather attributes many of her recent accomplishments to her personal attendant, Betty, who quickly immersed Heather in activities such as assisting with household errands, meal planning and preparation as well as recreational opportunities. As a result of her increased skills Heather recounted the occasion early on when she was able to surprise her mother with a hot meal she prepared and how they enjoyed it together while watching one of the St. Louis Cardinals World Series games on television.
But what Heather really liked about the additional independence from her mom and other family members was being able to buy her mom a Christmas gift and have it be a total surprise to all.
Heather Michele receives case management services through Developmental Disabilities Resource Board of St. Charles County.
Partnership for Hope Waiver
Improved Employment Opportunities Through Speech Therapy
By Karen Craven
DDRB Community Resource Specialist
Doug Ludwinski is a busy, well connected 28 year-old man. Between work, and helping to maintain the home he shares with his mother, Doug also performs yard work for other family members, plays golf weekly with a long-time friend and is a loving uncle to two nieces and five nephews. In his leisure time Doug enjoys cooking and is a voracious reader of sci-fi fantasy novels.
Yet Doug has a diagnosis of Down syndrome and a common physical characteristic associated with this condition is an enlarged tongue that makes it difficult for Doug to produce certain sounds. He is understood well by his family and close acquaintances, but those not familiar with Doug can have some difficulty understanding him.
When Doug began working at his current job four years ago he became increasingly frustrated with not being understood. Over time, he spoke less and less to people unfamiliar with him.
Doug recalled a turning point in his life when a customer left his change on a counter. When Doug tried to return the money, the customer couldn’t understand him and declined the money. Doug then tried to enlist assistance from a co-worker and Doug encountered the same problem. Luckily, it was at the end of Doug’s shift and his mother had arrived to pick him up. Doug explained to her what had happened and they were able to return the money to its rightful owner. Doug said it was then that he decided he really needed speech therapy to be able to communicate more independently, especially on the job.
While Doug wasn’t a candidate for speech therapy under his medical insurance, as it’s considered a rehabilitative service to restore a lost skill due to illness or injury, Doug was eligible to receive speech therapy through the Partnership for Hope Waiver.
The Partnership for Hope waiver was created in 2010 as a result of a voluntary partnership agreement between Missouri Department of Mental Health Division of Developmental Disabilities and Senate Bill 40 Boards across the state to equally share the state cost of a new waiver service named Partnership for Hope. It serves eligible individuals with developmental disabilities who require $12,000 or less annually to access necessary services and supports that develop greater independence within their own home and community. The Developmental Disabilities Resource Board of St. Charles County (DDRB) has participated in the Partnership for Hope Waiver since its beginning.
For the past year Doug has worked with his speech therapist one hour a week and practices regularly. His improvements are noticeable to family, friends and co-workers. The other big pay-off is at his job. Doug is now working at the customer pick-up window during the lunch rush where he greets and thanks customers while handing them their food purchases. His positive attitude and infectious smile are a perfect fit to the great customer service Doug provides.
Doug looks forward to continued improvements that will lead to greater independence on the job and with his many community contacts.
Parents who have children with developmental disabilities have a special understanding of each others’ unique situation. However, many families feel isolated in their experience because they are not connected with these other parents. To create this network, the grassroots organization Family Advocacy & Community Training (FACT) provides programs that build parent-to-parent mentor relationships.
Their most recent project, the Family Support Program, strives to provide the same services to families that have children with developmental disabilities that programs like Partnership with Families provide to families whose children have mental health challenges. By focusing completely on developmental disabilities, the Family Support Program gives families of children with disabilities support, genuine understanding, and better access to information and resources on a day-to-day basis.
Family Support Program Highlights Developmental Disabilities
FACT has developed many successful programs over the years, but many of them went through an initial pilot period of two to three years. If in that period the pilot program has provided proven results, it becomes a regular FACT program.
Their hugely successful Partnership with Families program serves children with emotional disorders. However, since these families often had children with differing diagnoses, FACT wanted to dedicate a separate program that specifically empowered families whose children had developmental disabilities.
Referral to Family Support Program
In addition to word-of-mouth referrals to the program, common referral resources come through:
Once a family contacts FACT, the Family Support Program refers the family to a Family Support Partner.
Family Support Partners Provide Parent-to-Parent Mentor Relationships
Professional care is often needed for children with disabilities. However, these services often fall short of providing families with all the tools they need to travel with their child into adulthood. Parent mentors fill this gap. Since Family Support Partners have had similar experiences with their own children, it is easier for the parents we serve to ask questions and build more trust with parent mentors.
Professional parents, or “Family Support Partners,” are all participants that have a child or children with developmental disabilities. When working within the Family Support Program, you are empowered by a parent with first-hand experience who will not marginalize you or your family. By connecting with a professional parent, you will learn how to use your voice in a variety of situations families often face when their child has a developmental disability.
Training Professional Parents
Parents who wish to become Family Support Partners go through a comprehensive training and accreditation process with FACT, including
- 6 weeks of in-house FACT training
- Gaining accreditation from the National Federation of Families for Children’s Mental Health
Helping Families Regardless of Their Obstacles
Many people forget that families have many obstacles to overcome that have little to do directly with their child’s disabilities. Recently, FACT’s Family Support Partner Alison Telge helped a family whose son, Joe, had serious behavioral challenges brought on by his Autism and other developmental disabilities. In addition to Joe often expressing himself by biting, pulling hair, or hitting himself and others, neither parent spoke fluent English. The family had trouble communicating with professional care providers, schools, or other professionals due to a language barrier.
Unfortunately, this major complication was largely unattended until a neighbor called the Children’s Division after hearing yelling from inside the family?s house. A Children’s Division representative arrived and was quickly faced with the inability to communicate her expectations or the parameter’s of their organization’s support. As a result, the Children’s Division referred the family to FACT’s Family Support Program.
FACT sent Alison, who quickly realized the family’s language barrier was a significant issue in their day-to-day lives. Professionals never had the time to make this effort and the family had suffered accordingly. While not bilingual, Alison had the time and patience to speak with the family and show them how to more effectively communicate with doctors, schools and the law. In addition, Alison worked directly with the Children’s Division worker to place behavioral interventions in Joe’s home.
The Family Support Program is not a one-time event. Alison has continued to assist Joe’s family as they face a multitude of challenges. For instance, although Joe’s family had access to St. Louis Regional Office services, they did not know how to fill out the form for respite care. Alison helped them fill out the form and now the family benefits from those services.
This continuous interaction helped Alison understand Joe’s family in a way that temporary or one-time assistance cannot. Over time, Joe’s family trusted Alison to come to their son’s doctors appointments in order to better communicate their needs. At one time, Joe had been unable to swim because he had recently had tubes in his ears. Alison knew that swimming was the only form of therapy that had an immediate calming effect on Joe and entirely addressed his sensory needs. Therefore, Joe’s parents asked her to attend Joe’s doctor appointment. Alison was able to explain the swimming situation to their doctor and also explain the doctor’s advice to the parents for how Joe could continue swimming even with his ear tubes.
DDRB Funds Flexible Programs
Pilot programs often need a great amount of flexibility in order to survive and be effective. Without this flexibility, programs would die before ever obtaining a “regular program” status. These programs will provide families with a richer life at a lower cost, leading to more efficient models for the future, but the necessary ongoing adjustments can make it difficult to find the right kind of funding.
“DDRB’s contribution is priceless,” says Denise Gould, Executive Director of FACT. “They understand the flexibility needed in pilot programs.” Rather than rely on statistics, which cannot exist in a pilot program, DDRB supports ideas and solutions based on experience. With this in mind, DDRB is not just financially supportive. They help FACT problem solve at a higher level by providing their experience with developmental disabilities.
At this time, FACT’s current funding only allows one Family Support partner. The limited resources also limit the number of families that can be involved in the program. Luckily, there is a current national movement towards developing parent-to-parent support in the community for families with developmental disabilities.
One of the biggest road blocks for caregivers of people with disabilities is understanding the most effective and respectful way to treat the care receiver. While there are resources available, there’s no one size fits all approach. Not only do people with disabilities have their own unique needs, but caregivers can range from family members to school personnel, occupational therapists, and staff members with their own unique needs.
With such a wide variety of support systems for individuals with disabilities, it’s important for each group of caregivers to have their own tailor made approach. DDRB has sought to accomplish this by supporting Behavior Solutions, an organization that provides effective training in St. Charles County through their program, “Teaching Others to Teach.”
The “Teaching Others to Teach” program has two main goals:
- Showing the greatest amount of behavioral improvement in the shortest amount of time
- Teaching attendees how to teach future caregivers
Classes & Workshops Build an Informed Foundation
Behavior Solutions first provides caregivers with a basic understanding of how to conduct an assessment and develop specific strategies for each case. This information is covered in group classes, which cover a wide variety of the most common issues caregivers face, including:
- Language and communication
- Social and family interactions
- Community Outings and Integration
- Feeding, toileting, and sleep issues
- Academic needs
- More severe behavior problems
While “Teaching Others to Teach” is heavily attended by those affected by autism and down syndrome, the program is equipped to help caregivers with any developmental disability a person may have. When possible, the classes are grouped by disability in order to achieve the most effective class time. Then classes are modified to meet the needs of attendants, including everything from the types of behaviors being addressed to what time of day the class takes place. This is why class time varies greatly, but on average about 10 hours are dedicated to classroom-based discussion.
One-on-One Assistance Caters to Each Individual Case
Once the program’s attendees have a basic understanding of the issues and effective behavioral strategies, “Teaching Others to Teach” assigns a Licensed Behavior Consultant to each person with a developmental disability to develop a specific treatment plan.
These consultants are behavior analyst or assistant analysts licensed by the State of Missouri. In addition, Behavior Solutions personally recruits and trains each consultant for this particular program, leading many of their members to stay long-term with the organization. While many are experts in working specifically with children, the agency and staff has a long history of serving those of all ages.
When the consultant meets with families, they create a specific treatment plan for the caregiver and individual with a developmental disability. On average, these one-on-one sessions include ten hours of on-site services and coaching for each caregiver, whether that site be the person with disabilities’ home, work, or school. These final treatment plans cover everything from step-by-step approaches to behavior problems to tools you can use to ease communication.
Developing Processes to Ease Difficult Situations
Much of the discrimination against people with developmental disabilities comes from not understanding the sometimes inappropriate behavior that occurs. One family that participated in “Teaching Others to Teach” had a child with a developmental disability who would not wear clothes at home, brush his teeth, or put his bottom on the toilet seat. These behaviors caused stress within the family and even more so if they ever had company at their home.
Alan’s* specialized treatment plan used step-by-step approaches so he could overcome these difficulties. The steps addressed the difficulties behind each of his behaviors in turn. For instance, Alan did not like the cold feeling of the toilet on his bottom, which was one reason why he refused to sit on the seat. Therefore, the Behavior Solutions consultant and the parents learned how to celebrate small steps towards a common goal. Alan first learned to sit on the seat with his pats on before gradually learning to sit without his pants on. Eventually, Alan was comfortable siting on the toilet for a short time.
Similar step-by-step plans were provided for each of his behaviors until Alan began brushing his teeth and wearing his clothes at home. His parents were thrilled by these huge gains and continue to use their treatment plan to work towards greater successes.
Using Tools for Better Communication
While step-by-step processes worked for Alan and his family, other people may require actual tools to improve communication between caregivers and the person with disabilities.
This was the case for Joe and his family. Joe struggled with vocalizing his choices, transitioning from one activity to another, and focusing on specific tasks. Joe’s treatment plan involved one tool for each of his difficulties. Now, when choosing a snack or activity, he expresses himself using a visual chart, transitions are eased with a daily visual schedule, and a token board and small rewards are used to keep him focused on homework and other important tasks.
Workshops Improve Communication & Care in the Future
As the program’s name “Teaching Others to Teach” implies, Behavior Solutions strives to show current caregivers how to communicate treatment plans to future caregivers.
We’d like to think we’ll always be there to help our loved one as they move through life. However, whether we like it or not, people with disabilities have many different caregivers. That’s why it’s essential for caregivers to know how to teach others the components of a person’s treatment plan.
Once participating caregivers have a developed treatment plan with their consultant, they practice training others. This skill ensures there will be good communication between parties in the future while providing consistent support across multiple environments.
Providing Professional Assistance at Affordable Prices
Over 85% of “Teaching Others to Teach” participants have seen a dramatic reduction in the person with developmental disabilities’ behavioral struggles. However, most people would not be able to see these successes if it weren’t for local tax funds provided by the DDRB.
“It’s been fantastic partnering with the DDRB,” says Dr. Colin Peeler, owner of Behavior Solutions. “The DDRB’s funding for the program has enabled families across St. Charles County to access services they otherwise may not be able to afford.”
*Names have been changed to protect the privacy of those involved.
Partnership for Hope Waiver – Celebrating Steady Progress
By Karen Craven
DDRB Community Resource Specialist
Steady progress can be a great cause for celebration. Like the athlete who steadily prepares for a marathon, Nate Huffman, who has a diagnosis of quadriplegic cerebral palsy, has been a consistent and committed participant in the on-going physical therapy he receives through the Partnership for Hope waiver.
The Partnership for Hope waiver was created in 2010 when Governor Jay Nixon established voluntary partnership agreements between Missouri Department of Mental Health Division of Developmental Disabilities and Senate Bill 40 Boards across the state to equally share the state cost of a new waiver service named Partnership for Hope. It serves eligible individuals with developmental disabilities who require $12,000 or less annually to access necessary services and supports that develop greater independence within their own home and community. The Developmental Disabilities Resource Board of St. Charles County (DDRB) has participated in the Partnership for Hope waiver since its beginning.
Nate was one of the first participants enrolled in the new waiver and began receiving services in the fall of 2010. Then 27, Nate’s physical condition was in decline as he had received no therapies since graduating high school at the age of 18. Over the years he had lost a lot of strength and was requiring more assistance. His mother, Chris Heitman, was not only concerned about Nate’s physical health, but also about how she could continue to support Nate’s physical needs in the family home. The Partnership for Hope waiver provided physical therapy, adaptive equipment and personal care assistance to bridge the gaps that were jeopardizing his health and safety and ultimately his ability to remain living at home.
Since then it’s been steady progress. Nate receives on-going aqua therapy, a warm water therapy that assists with muscle elasticity and strength, weight bearing, and physical stamina. Adaptive equipment of a specialized floating vest, leg weights and float cuffs allow Nate to simulate walking in the pool.
While the finish line may differ from a marathon runner, the stakes for Nate are just as high and require the same commitment and concentrated effort over the long haul. Nate has steadily progressed to being able to enjoy time in a family member’s pool with little assistance; something he reported he used to do but lost the ability over time. Thanks to the on-going services provided through the Partnership for Hope waiver, Nate continues to celebrate steady progress and good health.
Partnership for Hope Waiver –
One-Time Home Modifications Provides Years of Independence
By Karen Craven
DDRB Community Resource Specialist
At three years of age, Bob Schroeder was struck by a motorcycle and suffered a serious spinal cord injury resulting in a diagnosis of incomplete quadriplegia.Despite his injury Robert continued to enjoy an active life with his friends and family and earned a Bachelor of Science degree in criminal justice from UMSL.
Throughout the years Bob remained in his family home where the majority of his needs were met by family members. One by one, his four siblings have moved out and his father is now deceased.Bob is currently 43 years old and he and his mother, Elaine, who has since retired, are all that remain in the home.
Elaine provides all of Bob’s supports including personal care and transportation needs. The two are very close and choose this living arrangement. They enjoy shared activities, but do have interests and obligations independent of one another. This became an issue for the two because while Bob could navigate his electric wheelchair freely within the home, there were barriers for him to operate a telephone, lights or exit the house in the event of an emergency if left home alone.
The cost to accommodate Bob’s need for environmental controls was beyond what Bob and Elaine could afford as Bob subsists on his father’s Social Security retirement benefits while Elaine draws from her own. Unfortunately, their request to fund the adaptations Bob needed languished on a lengthy wait list for years. Any available funding went for people in crisis.
Situations like Bob’s were not uncommon. Lengthy waits often led to crises that jeopardized a person’s health and safety to the extent that, for some, residential or out of home placement was their only option. With a median annual rate for institutional care in Missouri at $52,830 per person in 2013¹ this was also an incredibly expensive approach to addressing needs that perhaps could be resolved for far less.
In 2010 an innovative new waiver service was created to shift from a crisis driven system to one of crisis prevention. Led by Governor Jay Nixon, the Partnership for Hope Waiver is the result of voluntary partnership agreements between Missouri Department of Mental Health Division of Developmental Disabilities and Senate Bill 40 Boards across the state to equally share the state cost of this waiver service. The Partnership for Hope Waiver serves eligible individuals with developmental disabilities who require $12,000 or less annually to access necessary services and supports that develop greater independence within their own home and community. The Developmental Disabilities Resource Board of St. Charles County has participated in the Partnership for Hope Waiver since its beginning and Bob was one of the first enrolled.
Bob’s one-time expense in 2010, which was well below the $12,000 cap, has allowed him greater independence in his home, required less need for respite hours for his mother to tend to her own personal needs and the option to remain living with his family. Today, Robert is happy to report that his needs are being met and that he has discontinued the waiver service knowing that if he encounters needs in the future, the Partnership for Hope Waiver is still available to him.
¹Semi-private room in nursing home, Genworth 2013 Cost of Care Study