OPWDD Public Hearing — Testimonies

Last week,  a number of folks offered comments at the OPWDD Public Hearing on the five year plan addressing the 1115 Waiver. What follows is the testimony of NY Self Determination parents who offered their comments at the hearing:

Shelley Klein
My name is Shelley Klein. I live in Westchester County. My son has been one of the fortunate few in the Hudson Valley area to be a beneficiary of the 1915c waiver through Consolidated Services and Supports.

Through CSS, my son lives a life that is truly integrated in his community – one he chose for himself, with a circle of support of family, friends and professionals who treat him with dignity and respect. He is a shining example of what the OPW system can achieve when it puts the individual first and center, with an individualized budget that removes the institutional bias.

The proposed 1115 waiver has the potential to significantly expand the number of individuals who can benefit from the type of person-centered delivery of services my son receives.

However, while the stated goal of the waiver is to increase individual choice and control over plans and budgets, I am concerned that the DISCO system may, without careful structuring, have the unintended consequence of a new, and even larger, institutional bias.

How will individual plans and budgets remain individualized in a capitated fee environment, where DISCOs are keeping an eye on their profit margins? What will happen if an individual has a change in health status due to injury, illness and/or aging?

What mechanism will be in place to make timely changes to individual budgets so that the individual can receive the needed medical services without jeopardizing other necessary services in the individualized plan?

Housing costs are another area of concern.  Rent increases, and other housing cost adjustments, are sometimes unpredictable.

As with health care, there needs to be a mechanism that assures individuals and their families, that increases in housing costs will be handled seamlessly and the DISCO will not force individuals to move to remain within a capitated rate, or reduce access to other services necessary to maintain the individual within the community.

I hope that as the plans for the waiver evolve, mechanisms will be put in place to adjust for these and other contingencies, so that person-centered plans remain so, and the institutional bias does not re-emerge in the new DISCO system.  

Thank you for this opportunity to provide input into the development of the 1115 People First Waiver, and for your efforts to transform our system into one that truly puts people first.

Kathleen M Quinn
If you were to walk around my town of Floral Park, on the border of Nassau and Queens Counties you might see my daughter Mary walking into The Associated to pick up rye bread and tuna salad for lunch.  In the morning, she is greeted as she crosses the street by the school crossing guard as she goes to Our Lady of Victory Parochial School and up to her 7th grade class in Junior High.  

She spends six wonderful weeks at Camp Anchor in Lido Beach with her siblings who work and volunteer there, funded by the town of Hempstead.  It’s a little piece of heaven.  

On Fridays she likes to get a slice of Sicilian and a pinwheel at Village Pizza or an ice at the Sweet Shop.  Everyone knows Mary Quinn.
Twelve years ago my daughter Mary was diagnosed with Down syndrome and a congenital heart defect.  Post-surgery, she survived a staph infection and because of complications that arose, is medically fragile with significant respiratory issues and frequent hospitalizations.

She is the youngest of five children, a seventh grader at Our Lady of Victory Catholic School in Floral Park and an enthusiastic participant at Camp Anchor in the Town of Hempstead.

The 1115 waiver affords us a great opportunity to change course, to a new direction, one that enables individuals and their families to access self-directed supports more easily, and to forgo them when they are no longer appropriate without penalizing them

The 1115 waiver affords us a great opportunity to change course, to a new direction, one that enables individuals and their families to access self-directed supports more easily, and to forgo them when they are no longer appropriate without penalizing them

In the last seven years while Mary has been integrated into her home school,  
I have watched as the number of individuals who use self-determination has grown to over one hundred on Long Island.  

I know many of them: whether it’s Rachel at Hofstra or on the farm, Matt working  five days a week at a company in Garden City traveling to work on the LIRR, Steve working at a Law Office in Manhattan, Sara singing to three hundred people at a Gala, Mike getting his graphic arts degree and starting a card business, Ruth completing her umpteenth 5k and volunteering over 1000 hours with the elderly, Shelly tutoring school children who are also on the spectrum, and so many others working, acting, living a rewarding life utilizing CSS.   

Their self-directed service option is not stagnant: it’s flexible, it’s individualized, it’s person centered and its cost effective.

The 1115 waiver affords us a great opportunity to change course, to a new direction, one that enables individuals and their families to access self-directed supports more easily, and to forgo them when they are no longer appropriate without penalizing them.  The self directed service allows individuals to tailor the supports to their needs.  It allows supports to be fluid and to change as they grow and develop.  

The structure of the current system although well intended, produced an inadvertent result.  Many people have to leave their community to access adult services.  They lose the natural supports that they strove so hard to create in their community.

I want for Mary exactly the same thing that I desire for my other children.  I want to afford them the opportunity to live a fulfilling life simply stated to be happy.   

I am working to built natural supports, to create community connections and when the day comes that she transitions from school into the adult world, I want to keep everything that is great in her life and that is working and infuse supports and services where needed.  

My family does not want the State or OPWDD to build the ark for me to put my daughter on to weather the storm in her adult life.  I want to build the ship and want OPWDD to
lend some wind to the sails.  

We need to stop creating and perpetuating a service system that by design created dependency and inadvertently a segregated community. Preserve self-determination; expand upon self-directed service options, so that Mary and the next generation of individuals with varying needs can access supports that have both vision and value.

Frank Catalanotto
Good morning, my name is Frank Catalanotto.  I am a parent of a 31-year-old daughter with developmental disabilities – Sara has Williams syndrome.  I am also a member of the New York State Self-Determination Coalition.  

It comes a time that, like everyone else, many of our daughters and sons with developmental disabilities want to live on their own and make a life away from their parents.  Sara’s wish to eventually live on her own came soon after she finished high school.  

Like many parents with children with developmental disabilities in the public school system, we were comfortable with the fact that the school system was taking care of Sara and, we – to our regret, did not become pro-active in obtaining information on what services were available and developing a plan that could be implemented upon high school graduation.  As graduation day came closer and closer – panic set in – What was Sara going to do after she graduated and most important where is Sara going to live when we are no longer here?

A year before Sara graduated we began contacting various non-profit agencies on Long Island to obtain information on services and housing programs but did not find anything that was appropriate for her.  Also, there were long waiting lists for housing.  To give us more time to look for programs that would fit Sara, we enrolled her in two post graduate schools for people with developmental disabilities.  At one point Sara also tried day habilitation programs but did not like to go to them.  

Seven years passed from the time Sara graduated High School in 2000 to the time we found a program that would be acceptable for Sara.  

That is OPWDDs’ Consolidated Supports and Services program.  It provides assistance for Self-Directed Supports with Employer and Budget authority.  Sara and her Circle of Support developed an interim CSS Plan that specifically served her needs.  Her Plan went into effect in June 2008.  Sara started learning life and community skills and volunteered to sing for seniors and school children while living at home.  

In 2007 we also started working on creating an Innovative Alternative Housing opportunity for Sara – to live with roommates in an apartment setting.  After obtaining approval from OPWDD, for Sara to live with other Williams Syndrome adults with CSS Plans, we proceeded to find other interested families on Long Island through the Williams Syndrome Association.   This innovative approach provides for our daughters to live together with individual and combined supports and services.   

After much searching for an apartment the families found one that is close to a walkable community and in June 2010 our daughters signed a lease to live in an apartment in Smithtown.  In this time period, with family assistance, our daughters interviewed and hired staff for individual and combined support, we furnished the apartment, and with the assistance of a family computer expert a computer system and developed a imputed forms for bi-weekly time sheets, monthly mileage and other expense reports, and the monthly notes – all required by OPWDD as part of the CSS program.  This made life much easier.

This “venture”, developed through Person-Centered Planning, not only provides for Self-Directed Supports and Housing based on what our daughters wish to do with their lives but it is financially economical when compared to other OPWDD programs.

I am here to URGE the 1115 Waiver Unit to provide Comprehensive Self-Directed Supports with strong budget and employer authority for individuals and their families, and to offer it to all participants.

I thank you.

Wendy Kaplan

    I want to begin by thanking you for your service.  
 
    I also want to say that I am so excited by the language of individualization and self-determination that is set forth in this plan. I am also confounded that you have asked Consolidated Supports and Services, CSS to reinvent itself, because it is the program that has successfully achieved the results that you say that you want to make all other programs strive for. It’s as if you are asking all heads of programs to invent the wheel, and to CSS you say, “ Hey you over there! Put down that round thing with the hub and spokes and get to work!”
CSS can, and should be improved, but it should not be scrapped and reinvented.

    This is a program that has succeeded in providing a life of choice to its participants. And, quality of life is a function of having choice. Let’s think of a supermarket- the supermarkets work hard at delivering a quality experience because they know you have choice- you exercise budget authority from the time you walk in to the time you get passed the cashier.  Imagine what kind of quality you would expect if your wages were garnished ahead of time and you were assigned a store to shop in.  

    If you are truly committed to improving the quality of the lives of adults with developmental disabilities, you must look to preserve a program that celebrates choice- to exercise individual budget and employer authority- because this is how quality is born, and this is how it is maintained.

    We need to help people transition to a self-determined life by providing excellent supports- within OPWDD, the schools, and in the community. Families and direct support staff need more help than is currently given through CSS. Educating people about the breadth of opportunities to work together in the community is also very important. “Self determination” does not equal being alone. This summer, some CSS participants chose to work on an organic farm,  and they were incredibly successful at producing vegetables for their customers, and for the hungry Long Islanders who used the food pantry at which one of the CSS participants was already volunteering. This project, run by SustainAbility Services, was inspired, supported, and improved by the CSS participants themselves, their terrific staff, their families, and community volunteers, who all worked, side by side.  

    We have to walk the walk. If we truly want to have individuals engaged in a life of individualized choice, we can’t ask them to wait until we have finished a five-year pilot study of what is already successfully delivering such a life.  We need to publicize, rather than hide and discourage people from the CSS option, in every region of New York State, and we need to get everyone who has self-identified as wanting CSS to be able to have it- now. There is a waiting list of over one hundred individuals who want CSS on Long Island. I challenge and implore you to make good on your promise of a quality life experience by getting them off that list- and starting their lives of choice through CSS now.  Nothing could be more self-evident and straightforward for an agency that has the core values and goals that you have defined in this plan.

Again, thank you all for your commitment and service.

Diana McCourt

In its 5 year plan, OPWDD’s Mission and Vision Statements call for people with developmental disabilities to fully participate in the communities through meaningful activities.  AND its 5th principle is to “Nurture Partnerships and Collaboration” with systems and communities in order to foster this.  What’s missing is the how to.  What is going to be different and better?
The weakest part of our existing system is the manifestation of this intention.  People with developmental disabilities are still invisible.  It is still unusual to see them in the streets, at our workplaces, restaurants, congregations, theater audiences or recreational centers of our neighborhoods.  

As a mother I know the difficulty of finding welcoming community places for my daughter to visit comfortably much less participate in any activity.  It is usually the support workers or families (usually mothers) who have to facilitate entrance into community living .  We are either trying, single-handedly, to break through huge barriers or can only find segregated groups which might be fine programs but still not integrated and most often full to the brim.  Even finding unpaid work is difficult as overwhelmed community institutions can barely manage their own volunteer programs and tend to avoid the unknown experience of a person with disabilities wanting to work.

How is OPWDD going to carry us in this new direction of meaningful community participation which is a civil right, not to mention essential to mental and physical health?  To quote one social scientist, “loneliness is as dangerous as smoking”.  If we believe that people with disabilities have important gifts to offer, if we want to finally deal the death blow to institutional thinking, to help families stay together in their homes, or to support people to live more individualized lives in homes of their choosing, we must travel this road bearing resources and commitment.  

We are getting better at providing appropriate support to the individual but we rarely ask the questions: What support does the community need to welcome and include more people with developmental disabilities?  What can we offer and what is our commitment to the collective wealth and health of our local community?  What does the neighborhood need and want that we could help with?

Yet there is an implied thought that “natural supports” will evolve somehow if we show up, that relationships will grow, the community will begin to take on the job of inclusion.  We have been here long enough to know that it doesn’t work like that.

Community participation is not about outings.  Real involvement requires consistency of visits with familiar people who are welcoming.  Then participants will take on responsibilities, bring things to share, develop a valued role and develop real relationships.

We need the advocacy and expertise of paid community specialists meeting with neighborhood leaders, business associations, religious groups, etc. listening to what can be done that is good for all of us.  We need ongoing collaborative problem solving and creative community development through sharing resources; partnerships, statewide and local, that result in integrated, affordable housing, jobs paid and unpaid, invitations to recreational centers and congregations, roles in neighborhood organizations.  We need a quality assurance framework that values authentic community membership. We need to invest in it.