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Wednesday - July 23rd, 2008

Re-Design of the Service System in New Mexico

The Arc of New Mexico believes that there is a crisis in the developmental disabilities service system.  This refers to the Home & Community Based Services waiver programs. This system is steadily becoming less and less effective in meeting the needs of the citizens in New Mexico who have developmental disabilities.  This is in spite of the best efforts of many dedicated staff and professionals who face tremendous system obstacles to providing valuable and quality support on a daily basis.  The Arc also believes that the future of this system, as it is designed today, is unsustainable.  The Arc is calling at this time for nothing less than a re-design of this service system.  New ideas, new models, new concepts about how best to respond to the needs of citizens with developmental disabilities must be discovered and must replace the problematic features of our current system.  Individuals with developmental disabilities, their families and allies, advocates, government personnel and providers must share the responsibility for the re-design of the service system.

Why is the service system in crisis?

The indicators that have led The Arc to this conclusion are many and include the following:

• The average cost per capita has increased from $64,000 in 2002 to approximately $70,000 in 2007.  This makes New Mexico the 4th in the nation in spending for a Developmental Disabilities waiver program.
• The increase in the state’s share of FMAP has increased as the economy of the state has improved.  This means that the state pays a few cents more of each dollar that is used to pay for services.  The federal government is paying fewer cents per dollar for services.
• The legislature’s appropriations for additional dollars for serving people have been static over the past several years.
• The combination of the first three bullets means that more of the legislature’s appropriations are being used to replace FMAP share and to cover increased cost, and less on serving more people.  For this reason, The Arc predicts that a person getting on the waiting list today will wait 16 years; this is up from 5-7 years.
• To deal effectively with the seriousness of these issues requires consistent and dedicated leadership.  The lack of consistent leadership in the Department of Health and at the Developmental Disabilities Support Division disrupts attempts to adequately address the problems.  During the Richardson administration, there have been three Secretaries of DOH and four Division Directors at DDSD.  The frequent change in leadership interrupts any change initiatives and ensures that the status quo continues.

What if we just got more dollars appropriated?  Wouldn’t that solve the problem?

Funding will never be adequate to serve all individuals in the current system.  This is because current service design is rigidly structured and relies upon the most expensive service models.  For example:

<ul><li>• The use of the most expensive residential model, the 24 hour staffed model, is increasing in the Developmental Disabilities waiver program.</li>
• The cost of direct support professionals, most notably in the 24-hour staffed residential model, will become increasingly more problematic in the future as the workforce crisis necessitates increasing wages for direct support professionals.
• There is an over reliance on “professionalization” of all aspects of life in the Developmental Disabilities waiver program, which increases costs.
• The lack of flexibility in service choices and designs in the Developmental Disabilities waiver program makes it difficult to arrange services that are less costly
• The over reliance on bureaucratic requirements to assure quality in the DD waiver program is costly.
• Service models in the Developmental Disabilities waiver program are overly comprehensive and as a result are barriers to accessing natural support and community support; some say the Developmental Disabilities waiver is designed to “buy a life”
• Self-directed, flexible models that are likely to cost less are underutilized, such as Mi Via and the Self-Directed Family Support model.</ul>

What are some hopeful trends and models for re-design?

Trends in the field of services and supports for people with developmental disabilities that are less costly are based on the concepts of:

• Freedom and choice for individuals and families to design an array of services and support to meet their needs, not the service system’s needs
• Self-direction and control of service dollars which has been demonstrated to cost less
• A shift in the purpose of service models away from being overly comprehensive – the “buy a life” model – to supporting individuals in the lives that they choice
• Seeking other resources for support, such as community resources and other public programs, such as housing and transportation
• Improved public education that is more inclusive and places higher expectations on academic achievement for all person with disabilities and that will result in higher levers of independence and employment
• Empowering person centered planning processes that help find creative ways to meet individuals needs outside of the service system in the interest of keeping people connected to their communities, included in community life and free from service system environments to the extent possible
• Creative support strategies to help individuals generate income so they can do more for themselves
• Greater flexibility in arranging supports on an individual basis that allow for alternatives strategies to the 24 hour staff model, such as house sharing and technology for safety
• Intentional strategies designed to build relationships in the community around individuals, which enhances opportunities for natural support and serves as an alternative to assuring quality
• Quality assurance models that rely upon self-responsibility for assuring quality and peer-to-peer programs

In consideration of the re-design of the service system, The Arc of New Mexico believes that:

• The current service system is unsustainable in the future
• It is untenable that some people have no support while others have services; this is a situation that we cannot tolerate
• It is possible to create a system to support all people to live the lives they choose
• It is possible for each individual and family to creatively craft an arrangement of support that responsibly uses the service system in partnership with other community, personal and public resources
• There is a wealth of knowledge and experience among the staff and professionals who serve people today that can help to generate sound ideas for system change in the future
• Individuals with disabilities and families, in service or on the waiting list, have the responsibility, individually and collectively, to re-design the system for support of all
• The Arc has the responsibility to provide the leadership to involve individuals with disabilities, families, the state, elected officials, community leaders, providers and other stakeholders in collaborating together to re-design the service system in New Mexico

The Arc of New Mexico adopts these principles to guide the re-design of the service system:

• The provision of services should not interfere with self-determination, inclusion in the community, developing supportive relationships, and accessing a variety of resources outside of the state service system
• Staff and professionals have long supported these principles will be valued partners in the effort to re-design the system
• Individuals and families will have access to an empowering person centered planning process that supports the dreams and values of the individual and family and creatively discovers ways to support the individual that incorporates personal, community and public resources in collaboration with the state service system
• Services will be self-directed
• Quality assurance will be a shared responsibility between the state and individuals/families
• Commitment to health and safety, as defined by the individual/family
• Ongoing collaboration among all stakeholders (the state is a stakeholder) to design, reflect upon performance, clarify learning and continual change of the state service system
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Wednesday - July 23rd, 2008

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Friday - September 21st, 2007

First, what is Mi Via?  It means “my way” or “my path.” It is a new Home & Community Based Services Medicaid waiver (HCBS) that blows many of our assumptions about serving people out of the water.  Mi Via changes fundamental ideas about public policy and funding for long term services for people with a variety of disabling conditions.  In New Mexico, participants of Mi Via can control their allocation of Medicaid waiver funds and self-direct their services by purchasing the services, supports and goods that they need.  Medicaid-eligible people with physical and developmental disabilities, HIV/AIDS, brain injury or who are elderly are eligible for Mi Via.

So what does this have to do with whether or not Bill Richardson should be President?  Let’s consider the following:

Bill Richardson knows when incremental tweaking of the old service system isn’t enough and only a new vision and values that are generated through in-depth conversations with a variety of stakeholders will adequately address the issue.  New Mexico involved stakeholders, including people with disabilities, family members, state personnel, providers and advocates, in conversations over many years in the creation of Mi Via.  Stakeholders are critical partners in shaping everything about Mi Via. 

Bill Richardson trusts that citizens can know what is best for them.  In Mi Via, the participant is the decision maker and in charge of their life.

Bill Richardson wants to expand the market place for purchasing services, support and goods.  The current system of long term care uses Medicaid enrolled provider networks to serve people.  Mi Via participants can continue to use this provider network or can go into the community-at-large to purchase services, supports and goods. 

Bill Richardson trusts that people who receive services can share in the responsibility of good stewardship for public money and will seek good value for their dollar.  Mi Via participants are eager to be responsible for making wise choices about how they use their Medicaid funds.  Mi Via participants want the flexibility to be creative in figuring out how to meet their needs.

Bill Richardson has the courage to be a leader of innovation that, though it will be enormously disruptive to today’s system of long term care, will stimulate the change and flexibility needed to create a new reality of long term services for people with disabilities in our country.  Mi Via challenges many of the assumptions of state personnel and providers about what constitutes a good system of long term care.  Even the assumptions of people with disabilities and their families are being challenged.  It takes courage to stand up for a new vision and give space to an initiative that will change so much for so many. 

Bill Richardson, like every Governor in the country, wants to find a way to get more “bang for the buck” out of the Medicaid program and understands that Mi Via demonstrates a step in this direction. Self-directed pilot programs demonstrated greater cost effectiveness, coupled with improved quality of service and greater satisfaction of service recipients.  More people can be served so this will help reduce the waiting list.

Bill Richardson knows that Mi Via is the kind of public policy and funding innovation that even Republicans will appreciate and will have bipartisan support.  Republicans who believe in less government intrusion in people’s lives, free market place competition and personal responsibility will find things they like in Mi Via. 

So who wouldn’t want a President that has the courage to address our real problems by challenging fundamental ideas that no longer work? And who seeks the ideas and diversity of opinion from stakeholders to create a new vision and values?  Or a President who seeks to establish real partnerships with citizens that result in shared responsibility and empowerment of citizens with government?  And what about a President who can generate bipartisan solutions?  Specific to Medicaid, how about a President who understands that simply cutting funding will not solve the problem or serve our citizens well?  A President instead who seeks a new reality and real solutions?

Watch Bill Richardson.  Watch Mi Via.  See transformational leadership in action.

Now for my disclaimer:  The Arc of New Mexico in no way endorses Bill Richardson for President.  The Arc does not endorse political candidates for any office, ever.  Actually, I’m not sure that what I have attributed to Governor Richardson is fair or accurate.  I have never talked to him about Mi Via.  I do know that he tasked the leadership of three of the state’s departments with creating and implementing Mi Via.  They have worked very hard to carryout his assignment.  I talk to many of them frequently and admire them and the work they have done.  Many of the points I make above I can attribute to them.  Mi Via is an astounding story – maybe unintentionally, but astounding none the less – of transformation and change.  Mi Via and what it represents and how it happened need to be part of our national discussion about disability policy as we approach a Presidential election and a new administration.

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Friday - September 21st, 2007

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Monday - November 15th, 2004

It is so affirming and wonderful to know that you are part of a group of people who share a common interest with you.  The participants of the first Institute on Self-Determination have developed an incredible bond with each other.  They have discovered kindred spirits and take great joy in each other.  Similarly, the spirit of shared lives and dreams was very strong at The Arc annual conference in early November.  Those in attendance were happy to get reacquainted with old friends and make new ones.

This kind of bonding social capital is good for mobilizing solidarity.  Robert Putnam, in his book Bowling Alone: The Collapse and Revival of American Community, defines bonding social capital as “sociological superglue,” relationships and shared interests that draw us together so we can support each other.  Consider how important it is for individuals with disabilities, family members, and professionals in our world to bond together.  How would we ever survive without one another?  The tighter we are, the more we stick together, and the stronger we feel.

There is another kind of social capital that Putnam describes in his book; “bridging.” He refers to bridging social capital as “a sociological WD-40.” These are the relationships and connections that grease the skids, so to speak.  Bridging social capital provide linkages across groups for accessing what you need or creating a greater whole. 

Bonding is better for “getting by”; bridging for “getting ahead.” Bonding is exclusive; it is our group.  Bridging is inclusive; it is all of us. 

John O’Brien, at his workshop on November 6, told us we have a choice.  Whenever we confront a need we have, or a desire to fulfill, do we look to our Medicaid wavier services to address it or do we reach out into our communities to build a connection?  What is the danger of staying in our niche of developmental disability services and supports?  We will not build bridges from our world to the whole world.  We will isolate ourselves.

So, what would this look like in real life?  Let’s say a person with a developmental disability enjoys bird watching.  At a typical team meeting, a bonding group, to plan waiver supports and services, we would likely schedule a staff person to take this person on bird watching outings.  There is nothing wrong with that.  But if we think about bridging social capital, we would instead think of finding a group of people coming together around their interest in birds, maybe some kind of bird watching club.  We would support this person’s introduction into this club.  Once there, this person may become involved in creating or preserving an environment for bird watching.  He/she is now building our community, not just consuming it.

There are so many things we have to work on together in our developmental disabilities world.  We have legislation to support or oppose, rules to create or reject, systems to change, advocacy for rights in the system, services to provide, funding to secure, quality to assure, etc.  We have to bond together to make things right.  But another message from John, through the story of Waddie Welcome, is that we can have a service system that does everything it is supposed to do, and there is still a void in the lives of consumers.  That void is what is missing in people’s life that only the whole world can provide; relationships, sharing interests that are not disability related, working with all kinds of people to build a better community, connections that help us get ahead, etc.

I don’t know about you, but I only have one life to live.  One hour is always one hour, never more.  I know it is important to spend time and energy on bonding with others, to build our strength to take on the challenges we face.  But I realize that I need to spend more time and energy on bridging social capital.  Next time you or your family member with a disability has a need or a desire to fulfill, what choice will you make?  Will you turn to the waiver system to meet the need or fulfill the desire, or will you seek to be a bridge builder?  If you do one, you are not likely to do the other.

Posted by
Monday - November 15th, 2004

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