EFFECTIVENESS OF HOME AND COMMUNITY-BASED SERVICES PLAN

INTRODUCTION: Several years ago, the Federal government issued what is now known as The Settings Rule (CMS, Home and CommunityBased Services Plan). This compulsory initiative was designed to curtail "facility" based programs (sheltered workshops, campus-based programs) and transfer them to "community"- based programs. While most families agreed that the intention was appropriate (end isolation and encourage more community inclusion) many families felt it was not in the best interests of their children. They argued that their children preferred the more familiar settings, were happy being with their friends, coworkers and safe surroundings. Despite the core value of the Settings Rule being "person centered," many families felt that the new ruling negated, ignored or neglected true "choice." Many felt intimidated, manipulated and overpowered. This article reflects the view of a parent who feels that the Settings Rule is a step backward and argues for its reconsideration. While Exceptional Parent (EP) magazine has historically not printed any articles that did not identify the author, I felt compelled to honor the wishes of this parent. The fact that the parent did not want to be identified is significant it that it reflects the fear of intimidation on behalf of many parents and families. We offer it to EP readers with no judgment or bias and would welcome articles that oppose this viewpoint. – Rick Rader, M.D., EP Editor in chief

It has been about three years since the implementation of the Federal Settings Rule for Home and Community-Based Services serving people with intellectual disabilities. As a parent of a child with intellectually disabilities within the U.S, I have seen and felt the results of mandated changes in community services in action. In addition, I have also talked to parents and individuals who are living with the results of the Settings Rule every day. I have read the federal document, as well as the State interpretation of this document, and it flows and reads like a masterpiece. I'm not sure that Thomas Jefferson could have done a better job. Words like choice, dignity, person-centered, independence, flexibility and integration are embedded throughout its pages. These are powerful words that paint an impressive picture of what it takes for the disabled individual to grow, be happy and function successfully in the community. Although I believe the plan was written with good intention, I do not believe that it is effectively working (depending upon how each State interprets this rule) for the majority of people with intellectual disabilities across our county. I assess the success of the plan based on 4 questions: 1. Does it work for the individual and their family? 2. Is it safe to all involved? 3. Does it provide real choice (is it a true reflection of person-centered thinking)? 4. Is the individual happier once the implantation of the plan is complete?

QUESTION 1: Does it work for the individual and their family? Yes and No! ✓ Yes it works - for a small population of individuals who function at a relatively high level and who possess the requisite skills to work in the community, the rule can prove beneficial. In certain cases, it has provided employment, a true identity and clearly financial gain. However, many of the people who benefited from the transition should have never been guided away from anything but employment within the community. ✓ No it doesn't work- for others, there is a forced process of placing people into circumstances which offer little chances of success. To paraphrase the plan, it directs the individual to, "Go into the community learn, grow and succeed, and may the force be with you". Unfortunately it doesn't work like that. Author statesman Horace Greeley is famous for his decree, "GO west young man!" That idea worked well for a few seeking fame and fortune in the American Wild West in the late 1880s. Many however failed and many died and many were met with despair, hopelessness and tragedy out on that trail west. I share that with you because to paraphrase the Settings Rule and certain interpretations by various State officials, it basically says, "GO to the streets! and you will grow and achieve success." I am sure the plan was written with good intention. But writing a plan and executing a plan is totally different. Larry Bossidy, author of the great business book, Execution, nailed it when he wrote, "Without the ability to execute, the breakthrough thinking breaks down, the learning adds no value, people don't achieve goals and the revolution stops dead in its tracks. What you get is a change for the worst because failure drains energy from the organization." In this case, the Settings Rule sounds like fun and it sounds exciting and sounds challenging, but the reality is it cannot be a "one size fits all" solution to the needs of people with significant cognitive and physical disabilities. Many of my child's friends have a myriad of complex conditions and challenges (e.g., non-ambulatory, sensory impaired, behavioral challenges, seizure disorders and neuromuscular conditions). Asking these individuals to "Go to the streets," and effectively and successfully interact within the community five days a week, six hours a day, is not achievable. It is obvious that the settings rule as interpreted by many States, failed to recognize that limited resources, coupled with a fictitious and erroneous person-entered approach, would only leave people stranded.

It doesn't work for many people with intellectual disabilities because: • It's impractical! It takes twice as many employees to support the individuals and often it equates to zero paying jobs. • It's expensive! Going into the community means more people, more transportation, isolation from friends and adaptive equipment being placed at every location throughout the community. • It defies logic to require that every person participate in a plan that a State or Federal bureaucrat have mandated. The bureaucrat's response to a reluctance to operationalize the mandate, is that the provider is not creative enough.

QUESTION 2: Is it safe for all those involved? As parents of adult children, we share common concerns that often translate into safety issues /liability issues. This includes well intended people out in the community. Concerns/Issues • Toleration of (crowds, traffic) • Elopement into traffic, waterways, and balconies • Safety awareness (aware of dangerous situations) • High turnover rate of support staff (physical demands, limited pay) • Activities often depend on the weather (Too cold, too hot, windy, rainy) • Attention to tasks (Mistakes can have very negative results) • Lack of equipment (lifts, changing tables, positioning assists) in the community 

QUESTION 3: Does it provide choice? When the only outcome is involvement in the community, choices and options are obviously diminished. Whereas person-centered planning was designed to identify, extract, and honor personal choice. However, the reality of how many States have implemented the Settings Rule is a monolithic system which forces people to be active in fully-inclusive community settings, with little to no consideration of what the persons wants or needs. Individuals and their families ask:

• I can't afford movies and activities so who pays for volunteers helping with the group? • Do the people who write these rules, live them? • Why must we move around in the community all day? It's exhausting! • My son earned a monthly pay check of $200.00 at a Sheltered Workshop. The monthly pay check that he earned was important. That couple hundred dollars helped out and it gave him a feeling of achievement and self-worth. Why is it gone? • What is the growth benefit of walking in the mall every day?

QUESTION 4: Is it person-centered/ client driven? One size does not fit all. That goes for both shoes and people. In the book The Element, Sir Ken Robinson defines that "we are at our best and our high point of achievement when our natural talent and abilities intersect with our personal passion. That point of achievement is different for every person. It is especially unique and different for people with significant disabilities. It's also a whole lot more challenging. And so, with differences being so obvious, why does the Settings Rule and the interpretation by some States demand that every person wear the same size shoe? Person-centered should mean providing for uniqueness.

Tthe book The Element, Sir Ken Robinson defines that "we are at our best and our high point of achievement when our natural talent and abilities intersect with our personal passion. That point of achievement is different for every person. It is especially unique and different for people with significant disabilities. It's also a whole lot more challenging. And so, with differences being so obvious, why does the Settings Rule and the interpretation by some States demand that every person wear the same size shoe? Person-centered should mean providing for uniqueness. he MISSION of the Settings Rule is to maximize opportunities for people and to have access to the benefits of community living in the most integrated setting. With the goal being to maximize opportunities and to provide the most person-centered services to the individual, I cannot understand why services designed exclusively for people with disabilities are not considered integrative services. As a parent of an adult with a special needs child, I would hope that every State finds a way to provide comprehensive answers that really work for people with significant disabilities. That means finding a way to use both facility-based services and non-facility based services blended together. These comments are just a concerned parent's perspective. Those of us with adult special needs children need help. Thank you!•