Monday, February 28, 2005

Risk and Marginal Benefit-a new service plan

Today is my jet-lag recovery day. On the Doug is Goofy scale from 9 to 10, I think I'm at 9.91 this morning. Here are some thoughts about system reform from my vacation (Yes, I am that sorry.)

One concern I keep coming back to is the way the system is constructed to encourage innovation, individualism and creativity except the system of "accountability," which strongly discourages, um, innovation, individualism, creativity.

My sense is that the system as a whole is inefficient and ineffective because the mission is so expansive but the process for reward and correction is so constricting.

So I would offer these suggestions"

1. Service planning and evaluation should be specifically related in the regulations.
2, Service planning should distinguish between goals which allow for a great deal of variation in results (risk-seeking or risk neutral,) goals which should be pursued with some specificity while allowing for some defined variation in acceptable results (risk vs. reward) and goals which should be strictly defined in terms of outcome (risk averse.)
3. Service planning should include a hierarchy of benefit so that success can be usefully evaluated not in terms of box-checking but in terms of how the client experiences life and how the community experiences the client. On my vacation I was thinking about adapting Earned Value Analysis, a tool used in project management for service evaluation. I'm sure I'll write something fascinating about that next time the Doug is Goofy Scale falls back to 9.5 or so.

Monday, February 14, 2005


To the multitudes:

First of all, let me wish all my friends of easy virtue a happy Valentine's Day.

I kind of have the feeling this page is hard to follow for the few Californians who don't check every day. At some point in the near future, I'll try to learn how to categorize the entries by topic but for now, I'd like to post the overall reform agenda that I've written about.

The overall theme is that cost-effectiveness can be client-centeredness and visa-versa. Oh, and good.

I have written about possible system reform. The general idea is that the system would perform better at lower cost if the system were better disciplined by market forces and higher quality, more widely available information. These are the regulatory changes I'm interested in and advocating for:

1. Higher quality quality management, through a broad and active focus on outcomes determined from improvements in clients' lives and a learning model of evaluation.
2. Available self-direction/self-determination, with appropriately intrusive protections to broaden the role of clients and families in determing what supports will be most contructive.
3. Regional Centers should be increasingly accountable to communities and the state for both results and money. Boards of agencies that implement state mandates should be accountable to the greater community.
4. Provider rates should be based more on value, less on cost.
5. Information about the costs, outcomes and values of every agency and individual funded in this system should be reported in an accessible format to expand the ability of clients and their families to determine the most appropriate support and provider. The ideal being that service coordination becomes less prescriptive.

I have also written about the dialogue evolving in our system:
1. Everyone involved in the system should be linked to each other and to other people with disabilities for the purpose of providing a true dialogue and a combined voice. The California Disability Community Action Network (see link on left,) continues to be the best vehicle for this conversation.
2. Clients and their families as a group should not be spoken for by Regional Centers, Vendors, Employees of either, or associations of these. No professional group should seek to own or control "grassroots" advocacy.
3. We're basically all on the same page. Asked In public, more individualized, better funded, more efficient, and effective support for people with disabilities would be the goal of nearly all clients I've ever heard from, their families, staff, vendors, regional centers, and pretty well everyone I know in this system. I genuinely believe most of us mean it. I don't believe that people of ill-will are important enough in numbers or authority to be worth considering. All the reform to come can be a healthy negotiation among friends. Lighten up everyone, you're doing God's work and I'm sure the devil will forgive you for it.

Wednesday, February 09, 2005

A New Day- Summary

So, here are some reflections on the ARCA conference, starting with an overview (The previous 8 posts are notes from specific sessions:)

The conference was timely, and the content excellent and diverse in terms of the perspectives of experts from around (mostly outside) our system. Asking Peggy Collins to present a legislative perspective while Kim Rucker presented a client perspective on the same panel was especially inspired and made for an interesting contrast comparison with presenters from outside our system. That panel really clarified both the relevance of nationwide thinking and the criticality of local experience and perception. Julie Jackson did a terrific job in what may have been her public debut as Chief Deputy Director and I overheard many comments from my fellow wee folk reflecting that they looked forward to openness and/or honesty as characteristics that Julie brings to her new position.

So for all of those reasons, Kudos to ARCA and its conference committee for focussing on an important and actionable topic, and for recognizing well voices that our community needs to hear from.

On the other hand, my impression is that some opportunity was let go for now. Disappointments include the fact that so little dialogue was allowed by a dense schedule of presentations. Also, people with disabilities, their families, direct-care staff and service providers were highly underrepresented. There's an unmistakeable irony that the whole point of the conference was that currently available supports are overly prescriptive, unnecessarily limiting and unfairly unaccountable while the conference itself seemed organized around the principle that our community ails from not listening to the grown-ups. Did anyone get a conference evaluation form?

If anyone missed the irony, as I mentioned before, the lunchtime speakers on Tuesday described a perspective that the system is lazy, greedy, uncreative and divisive and that the responsibility of the Regional Centers for this state of affairs is in being overly tolerant. Those speeches also communicated pretty effectively that at least the speakers are contentedly out-of-touch with the community.

To the extent that the two RC directors at that session were intended to represent their peers (and the context suggests that they were) a lot of people will have found support for the idea that the Regional Centers are essentially arrogant and aloof. Many people who have been working for years to better serve clients will conclude that the purpose of the conference was to usurp their effort. As unfair and generally untrue as those messages are, they sure were sent.

A message for those who need it. Just over a year ago, the California Disability Community Action Network began successfully to connect people from this community to speak for themselves. The community has demonstrated that it can speak. About a week ago, the Vendor Advisory Committee of East Los Angeles Regional Center unanimously passed a resolution communicating to the board its willingness for and interest in eliminating barriers to person-centered supports. Countless other events sponsored or led by vendors, people with disabilities, family members and worker organizations sought to innovate the system towards a more reflective, responsive and cost-effective system. Generally, one aspect of these conversations and this conference has been the sense of each group that it is leading while everyone else stands around vainly defending the status quo and their own empires.

This conference was important, valuable and in many ways reflects the intelligence and determination of its organizers. It was an important milestone but the start of nothing. The events which recognize the unity of the entire community around an evolving, improving system; and which elevates dialogue above presentation will be the true dawn.

Tuesday, February 08, 2005

A newish Day: Workshop:

Topic: Organizational change/Converting Structured Services to Individualized Supports
Pat Rogan,
Scott Shepard
Dan Heldoorn
Yo Bestgen

[I missed the first part of this session ranting]

Strategies to address barriers:
>Clear Mission, vision and values
>Strong Leadership from within
>Stakeholder Involvement
>Ongoing staff education and training
>Flatten the organizational structure
>Person-Centered planning
>Team work

Other lessons learned
-Import expertise
-Change the agency’s image
-Pursue creative, alternative funding
-Unload sunk costs
-Terminate facility admissions and backfilling
-Demonstrate and celebrate success

Outcomes of Changeover Process
-People with disabilities were happier (90.5%)
-Better quality services (83.3%)
-Better community and employer relations (69%)

Organizational Restructuring
>> Staff roles and staffing patterns
>> Job descriptions and classifications
>>Authority lines/hierarchies
>>Role of Management

Human resource practices must change too
-job descriptions
-recruitment and hiring
-staff development
-feedback system
-pay and compensation
Q & A
Q: [I missed it, sorry Y]
SS: It may be heresy but money isn’t everything

Q: Do provider's get paid more for having flatter organizations and more plugged-in workers
A: No.

Q: Implied in these presentations is the assumption that real jobs lead to real lives and regular jobs lead to regular lives.
SS: Where do you live, where are you at?
Q Cont'd: I've seen a lot of work put into community-building, but it may not lead to the promised land.
PR: Job does not mean regular life.
Q: How are you measuring "regular lives?"

general conversation.

Q: We know the barriers and the strategies? Many of us don't know where to find them.
PR: Share what others have learned.

SS & DH:
Dan's Journey: The story of DH, a student at college of the canyons and employee at Orchard Supply, a person with the label of autism.

Staffing patterns: Part-time to full-time, Mix clients and staff.

Do we have a shared vision?
Building partnerships supporting choices (DDS)
AAMR and ARC new mission statements
Choice, direction, take risks

Person-centered services doesn't mean 3 or more service options with different staffing ratios.

[I missed some]

Agencies should develop effective and better ways to listen to the people they support.
Smaller is better.
All agency staff provide direct services

Q: What roughly is your budget for serving 20 persons?
SS: Budgeting is one person at a time, generally matches a residential support cost. IHSS monies blended in.
Other Person: $1200-month to $9000-10000

Q: What would be a typical day for individuals with higher needs who aren't interested in employment?
SS: We look at community college, parks and recs, volunteer activities.

Q: How is the searching for homes for clients?
SS: We have some situations where a roommate pays a little extra to use the garage or etc.


[My battery is about to run out.] Sorry, Yo.

A newish Day: The tailspin

We just had the lunch session. On the positive side- the caesar salad, poppyseed rolls, chicken with shrimp and cheesecake were alright.

On the negative side, the speeches were sibgularly (or doubly.) The speeches were extroardinarily patronizing and, in my mind, prove how far some leaders are from listening. Our whole community is the choir, and they were preaching the fire that awaits.

They may be right about what's happening and they are right about why, they're also part of the problem with the rest of us. The people who don't want change and who want to portray regional centers as the barriers to change can quote liberally from those two speeches. They also might point out how limited the opportunities were for input. If we're going to put petty grievances with each other aside then listening to one another, allowing each other as partners and believing in each other are fine places to start. Patronizing, dismissing and talking over are not.

If either speaker had been paying attention, they couldn't have spoken from the perspective on display today.

My review: Safe harbor was granted at lunch to those who oppose change and those who seek change were marginalized. I give it an F. 

P.S. I haven't seen any conference evaluation forms. For all the good content, it's pretty clear that input and dialogue were not planned outcomes of this conference. At least not at the conference.

The next new day: Second Plenary

Topic: Preparing People with Disabilities to Perform Meaningful Work in Integrated Environments
Speaker: Lou Brown, Professor Emeritus, University of Wisconsin

Talking about two populations. People with severe handicaps and people

President Bush's Commission.
If you have the label of developmentally disabled or cerebral palsy in Florida you ar 85% likely to be unemployed.

Referrrals to:

Skill training program?
Community College? "A stay of execution"
Segregated Workshop or
Sit at home

What happens to people with disabilities when their parents pass or become unable to care for individual.

Entitlements, discretionary program, therapy, paraprofessional, door-to-door service, and then at 21, individuals want the same things.

Academics? Algebra, Canterbury Tales, customs in foreign lands.

As adults: Sex, money, privacy

Replace clients in workshops with a wax replica.

Integrated work environment:
General environment, use natural proportuin
No more than two with disabilities in the immediate work environment.
Must work within sight sound and touch of coworks without disabilities.

[This is too funny]

Chamber of commerce definition of work: "If she doesn't do it I have to pay someone else to do it."

"Sorry. Intelligence is not distributed equally across people. If you knew my mother-in-law you'd understand why I think that."

Work, community and citizenship diploma. This is the goal.

If the goal is to keep unemployment high? What could we do?
Regular education with a 1:1 paraprofessional. Make sure they're exposed to abstract academics. Eliminate social promotion. Lower age at which you can quit school. 2000 kids quit school because they couldn't pass the high school entrance exam. Put more people in special education. Segregate schools and classes. Hire teachers with emergency credentials. Confine a structure to school grounds. Hide disability, don't talk about it.

What does job ready mean?

If the goal is to increase employment we can:
Use a portfolio of the skills the child we need. Teach to do those things in the real world. Teach to be nice, work hard, be reliable, on-time. Don't do for someone what they should be doing themselves. Testimony to their competence, talent and hard work. If you are employed 20 hours per week with benefits the last year of school, chances are you will be employed all your life.

Get employers to open the doors by:
-Generate work training and employment options
-job analyses
-match worker with vocational setting
-Provide authentic assessment (in the real world
-Shift to natural supervision-
-Arrange support needed indefinitely

Tools for finding the jobs:
> Parent dream lists- when do you think your child will leave school, where would you like your child to work?
> Environment, activity, social needs
> Personal preference
> Corporate commitments
> Personal relationships
> Job development circle
> Vendor list
> Canvassing
> Quid pro Quo

Easy part is finding the jobs. Hard part is getting school personnel off-campus to introduce students to real world experience.

Job Analysis:
-What work is being done?
-Who is doing it?
-Can we do a part?

Horizontal enhancement and vertical enhancement
Vertical: Greater complexity. Horizontal: New things, similar complexity.

"The more people we give chances to, the more amazed we are by what people can do."

Lesson: Rather than giving many people disabilities access to a single work environment, give each person with disabilities access to many.

The next new day: First Plenary

Topic: California update: Health and Human Services
Speaker: Julie Jackson, Chief Deputy Director, Department of Developmental Services

"It's hard to be representing Yoda" (Cliff Allenby)

"We need to do this more often."

1. The environment in Sacramento:
2. Major Initiatives and Issues

1. Fourth year of a budget "crisis." The economic environment affects everything in

Cost Savings
Cost Avoidance
Cost Containment

Cost avoidance: Closure of Agnew's Developmental Center.
Cost Containment: 4-7% DDS population growth. Expenditure growth 10-15% per year. We're no longer considered a little fish. It took 20 years to reach a billion dollars, five more years to reach 2 B. Three years after that we're at 3.3B

'05-'06 4.7% increase in dollars. Metaphor used in department "Three-legged stool" - Eligibility, Utilization, Rates.

25 years of cost-management through rates.
In 2001, eligibility was altered
2001-2003, utilization through POS standards.

Frozen rates and resource development-Temporary measures.

Success in Federal Financial Participation. FFP has doubled over three years. Recently succeeded in additional $20Million for targeted case management.

Growth in autism, 60% of intakes are full-blown autism. Majority of caseload is under age 18. People with autism tend to be more costly to serve.

Medi-Cal redesign. "You need to keep on top of Medi-cal Redesign." Expanding medical managed care, which will deeply affect people with developmental disabilities. Cap on dental services.

Long-term care integration initiative: "Three counties to begin with, San Diego, Orange, Contra Costa." A regional center system for medical.

Medicaid Modernization Act Part D, for people who are dual-eligible will have to switch to Medicare. Will impact, not sure how. It will happen this fall. We're going to do everything we can to get information to people to prepare for the change.

Cost Containment is about flattening the rate of growth, not cutting.

CA will be submitting a self-directed services program for both Medicaid Waiver and state-only. There are still things that we're working hard on. How to balance the little red wagon of federal requirements with the desire for choice.

Significant policy: Closure of Agnews. Significance cannot be understated. In the past, closing facilities has primarily been a matter of consolidating institutions. In the case of Agnews 80-85% of Agnews clients will be placed in the community.

AB2100: Approval from administration on affordable housing for clients. Liked the concept of "Buy it once, own it forever."
Family Teaching Home model. Up to 3 individuals in a home, Designed for Bay Area proposal but available statewide.

For people with stable but enduring medical needs, proposing a new model to be licensed by Department of Social Services with montoring and credentialing by DDS/Regional Centers. Will be waiver-billable. It's a pilot with limits (120 people and homes.) Independent evaluation.

Another major policy: Use of state Developmental center staff in transition period to allow up to 200 state employees to transition to either provide training and technical assistance or as a last resort until a new provider could be set up. "Very gutsy policy."

Will be legislative proposals on the previous two policy initiatives. Hearing on February 16.

Quality Management (QM:) New CMS initiative (quality framework,) developed a conceptual framework for QM. "I like the quality framework that CMS did." Will begin work on establishing outcomes and expectations based on the values of the system. For vendors, DCs, regional centers and the system as a whole. Apply indicators and develop IT systems to report. Still a conceptual design.

Two comments: I have really enjoyed being here. We really need to pull together as a family. We have to have you. We are a system. As a family, there are sibling rivalries. Look for leadership for a new era. We have to find a next generation of management and leaders. I want to sit down with a delegation of our system to talk about what we're going to about leadership.

Q: The usual about we need better rates.

Q: What are the criteria for the 900o or so people who will be eligible for self-directed services waiver?
A: I don't have the specific criteria which will be available in a couple of months. It will be voluntary.

Q: You mentioned the rise of autism. Has DDS considered asking for more money for Doctors for people with autism.
A: The numbers are real, we don't know why. There has been some significant monies coming into UC Davis from the CDC for studies of why autism is rising.

Q: The medical and IHSS, how that will be affected for people who live on their own.
A: I'm not working on IHSS, but administration proposes state portion of IHSS to be lowered in the hope that Counties will pick up the slack. Hah hah. (Or, MWAAAAAAAAHAHAHAHA)

Q: Will people have to choose between regular MediCal and privatization. Is that correct?
A: In specific counties, the plan will be to enroll everyone in managed care. You will have the right to be seen by a Doctor. Federal MMA, part D. For people who are MediCal and Medicaid eligible. Those people will have to get drugs through Medicare plan.

Q: For people like me who have no medical insurance, what will you do for us?
A: I would have to know your individual case.

Q: Q? Q? What is the action plan for unfreezing rates and unfreezing resource development.
A: The department as part of the administration works within the administration to seek funding. Once the budget is released we are the administration.

Q: Can you tell us anything about the administration's plan to tap special needs trusts?
A: No, thank God.

Monday, February 07, 2005

To Anonymous (February 7)

The comment posted anonymously to the post "A Newish Day: Lunch" is fascinating. To the person who commented there, thank you and I'd love to have that point explored more fully. So- an invitation- if you would write a short essay about your concerns and email it to me, I'll post it on this site. If you wish, I can invite someone from DDS who's working on the new waiver to respond, and the community can comment as you have. As I mentioned in an earlier, I'm excited both as a provider and a family member about Self-directed services, but I'm also concerned that not enough viewpoints were taken into account in the development of the waiver. To the small extent this site can help, I'd love to support some of the dialogue that should have happened already to take place.

A newish Day: Workshop:

Workshop Title: State Policy Initiatives to Facilitate Individualized Supports:

Kim Rucker, Valerie Bradley, Bob Gettings, Norm Davis, Peggy Collins, Judy Wallace-Patton

VB: Self-direction grew from family support movement, personal care assistance and moving people with disabilities moving into the comminite, self-determination movement.

Basic Goal of SD: Affords people opportunity to direct funds

1. Individual budget
2. Person-centered plan
3. Supports are directed by individual
4. Responsive and appropriat quality monitoring

Community services have historically been provided through private mostly non-profit agencies.

There is a delicate balance between risk control and choice

Increase flexibility, more control
Possibility of real reciprocal relationship with staff

Isolation of provider and individual
Maintaining energy, competitiveness, competencies
Oversight of provider quality

Basic qualifications, skills and competencies
-Some level of education/age requirements
-Threshold competencies

Person Centered Plan
-Identify needs for support, risks
-Determine Individual and family competencies
-Review person-specific competencies
-Determine degree of monitoring and the planning process

QA safeguard strategies
Case manager (broker) is crucial as link to traditional/professional system
Ongoing monitoring
Educated group of families and individuals with disabilities

Arizona has done a lot of work around safeguards including certification, background checks, licensing, core training

To do SD-
>Monitor outcomes
>Look at QA processes to determine which have the potential to be:
used consistently
reliable and valid

2:21 Bob Gettings: State Innovations

Quality Oversight and Improvement:
Massachusetts Quality Management System: recently released a system-wide QA report that summarizes data gathered from a variety of sources and supports. The report summarizes the results of two years data. 64 measures in 12 Outcome areas: health, protection from harm, safe environments, human and civil rights, protection of rights, choice and decision-making, connections, achievement of goals, work and qualified service providers.

Other state reports/resources:
Annual Report of the Vermont Division of Developmental Services
Pennsylvania's Incident Management System
New England Quality Collaborative

Promoting Inclusinve Practices
Resource: The Community Living Eschange Collaborative (CLEC), a CMS-funded activity is hosting an interactive discussion among states around inclusion of people with disability. Changing communities rather than changing individuals to promote inclusion.

Minnesota has just gone through a process of rethinking individual budgets. New individual budgeting methodology based on characteristics of individuals to try to predict needs.

Support Brokerage and Case Management Services: Minnesota has reconsidered case-management in light of SD. Flexible case management to foster more independent choice.

2:41 Norm Davis
"The Price of Self-Determination"
Three conditions:
Fairness & Equity, Redesign
Predictable and stable funding

Predictable and Stable Funding:
Who is "Self"
>>Circles of Support, Redefinition of family & guardian

What is "Directed"
>>Cooperative purchasing, micro-boards, cottage industry, small business development
>> Transition Savings Plans

>>:Life Coaches
>> Community Guides
>> Inclusion fees [?!?!?!?!]

Florida, Delaware and Montana
-Market Analysis
-Collect cost data and service and utilization data
-cost drivers
-individual needs assessment tool
-Standarizd reimbursement rates
-Integrate self-directed services tools

Look at cashflow for providers, net wealth, sustainability

What do people buy?
Not group homes or day programs
Staff time,
-personal support
-training and guidance
-therapies and nursing

People use similar amounts of services in very different ways

Personal cost factors (in decreaseing statistical significance)
Age and Family Situation
Community inclusion
behavior supports
health and wellness
current abilities

Dynamic pricing necessary

3:01 Judy Wallace-Patton and Kim:Rucker- San Diego's SD advisory committee
JW-P Brief history of the pilot projects, where they started
Each pilot used different standards for eligibility and implementation.
San Diego excluded children under age 3, random sample with subsample by age.
Substantial diversity by living situation and diagnosis
[I'm missing the next, oh, five minutes]
Challenge to make payment work.
Lesson: When we talk about quality indicators- keep them as close as possible to people and families.

KR: Experience of self-determination client
15000 consumers but 30 self-determination
Good quote:"You can have self-determination within the traditional system."
Recognizing that self-determination is primarily an internal condition with an outlook.
"You have to have a way of thinking that is within your budget and outside the box:

[Lightbulb moment- Norman Kunc and Kim are both saying that the adaptive, problem-solving skills that people with diasbilities have are the reason self-determination can be more efficient than the traditional system which is directed by non-disabled people.]

"Ask us what we think is best for us. We can let you in or keep you out."

3:20 Peggy Collins:
What's happening in Sacramento vis-a-vis non-traditional services
California finally has an Olmsted advisory process.- Chesbro agreed to stay in the process as long as its moving forward.
Olmsted presents an opportunity to focus across systems, across people.
Olmsted can move faster than state departments, evolve faster.
Lynn Daucher has a bill to require meaningful transition planning
Chesbro will introduce a bill.
DDS is where the big ticket items are
Agnews closure is huge, 10 years after the previous Camarillo
Building community infrastructure, new models are being developed to move people from DCs into homes, not ICF's.
Slef-directed services- worry about the fast growth. Initially legislature was careful that the initial Regional Centers believed in it. Now it will be involving RCs that don't embrace the concept and will alarm stakeholders who are more comfortable with the old way.
Rate standardization. We (the legislature) don't know what that means. Match expectations with what we are paying people.
Quality Management is important, to measure programs against outcomes. Hopefully not creating a QM system that is overly bureaucratic and punitive.
POS standards are now "common-sense cost containment strategies" Prospects dim in legislature.
Legislature is interested in feedback on how FCAP is going.

In other departments-
DHS Medi-Cal reform, very important for DD system although we are not always at the table. Expanding mandatory managed care. May be good for the general Medi-Cal population but concerning for people who need specialists.
IHSS reduction could be devastating for DD clients.
Deparment of Mental Health: What would happen if there was money in system to do real planning, intervention and development of improved system. $800 million averaged over five years. Statewide commission. Many DDS clients are also MH-involved. Chance to see how well this can work, shifting control out of Sacramento and into local hands. Very exciting (Prop 63). Look at changes in MH for good systems.

There are more innovative options on the table than there have been in a long time. It can all go South, so its scary. track legislation, agendas, etc. Public Hearings will begin soon. Lots of'em.

"Change is inevitable. We can control what it looks like if we use our voices."

3:43 Q & A

Q: Is there any information or studies around how to create quality incentives?
VB: Expansion of concern about competency of direct support professionals. Competency-based certificates in Ohio and Kansas. Use of "portfolio" rather than education. UMinn- college of direct support, on-line curriculum for direct-care staff.
Quality Mall- a resource for person-centered support.

A newish Day: Lunch

Lunch was chicken salad and chocolate cake. It was OK.

They Screened "Normal People Scare Me," a short film by Taylor Cross, a teenager with the labels of "autistic" and "high functioning." Way better than the food.

A newish Day: Second Plenary

Speakers: Bob Gettings and Valerie Bradley
Topic: Restructuring Long-Term Supports for Individuals with Developmental Disabilities: A National Policy Perspective

11:06 Bob Gettings (BG,) a discussion of factors motivating the reassessment of Medicaid policy, assess the prospects of alternative proporals and place them in CA-DD context.

BG urging DD stakeholders to craft their messages within the context of broader reform strategies.

"Medicaid reform could not and, in my mind should not, be the be-all and end-all of [system] reform."

"Simply being oppositional, in the current context, may not be enough."

Five Alternative Medicaid Reform Strategies
1. Capped Entitlement (Block Grant)
2. Federalize Services to Dual Eligibles
3. Strengthen State Cost Containment Powers
4. Emphasize Cost-Efficient Service Delivery
5. Continued Gridlock over Medicaid Policy

Block Grant:
>>Shift burden to States
>>Most States would be unable to maintain current eligibility and benefits (cost-cutting by proxy)
>> Impact on DD services uncertain [And, in all likelihood, protection of DDS services might suggest losses in other programs serving people with disabilities]

>>In theory, states would achieve substantial savings; many savings likely returned to fed. treasury.
>>Exacerbate Federal Deficit
>> Two-tiered system of DD benefits, more complication

Strengthening State Cost Containment Powers
>> Differences among state Medicaid programs further accentuated

Implications of Emphasizing cost-effective service delivery methods
>> More tightly managed set of benefits [?] and stronger emphasis on outcomes [!]
>> Properly structured, this approach could make it easier to promote individualization and consumer direction [slef-determination]
>> Challenge many traditional operating assumptions and, thus, be opposed by a variety of existing stakeholders
>> A variety of tough system design choices would be required

Implications of continued legislative gridlock
>> DD systens are likely to be buffeted by intrastate initiatives to contain the growth in Medicaid Outlays.
>>> Potential threat of centralization and less DD system management autonomy
>>> Possibility of reallocating dollars among programs, purportedly to achieve greater equity.

11:35 Valerie Bradley

There will be a national conference in DC in September co-hosted by several national agencies. Urges advocates to attend. No data yet on how to enroll.

1. Historical Overview of CMS changes
2. Antecedents for changes in CMS expectations
3. Changes in management and oversight of the waiver
4. Implications for States.

Standards are changing:
"Better than the institution" no longer adequate
Are we supporting positive outcomes
Is there Quality Improvement
Changing state role
Changes in experiences and expectations of families and people with developmental disabilities.
Moving away from prescriptive standards to individualized risk management
Consumer and family participation in oversight [I wish this were a better description of CA's system evolution]

GAO found problems in HCBS (medicaid waiver, see previous posts) services around QA systems

Quality Focus Area
>Access to Services
>Providers are available and capable
>Safeguards protect people
>Support for people exercising rights
>Personal outcomes and satisfaction
>system monitors itself, uses data to improve outcomes

New Approach to HCBS waiver-writing- New requirements as of this year
>>>States must build quality and self-direction into the design of their waiver application
>>>States monitor individuals/solves problems
>>>States collect and analyze data for trends and patterns
>>>States change policies, practices and resources based on analysis
>>>States report Quality Management (QM) activity and results to CMS and the public
>>>CMS maintains an ongoing dialogue with states and looks for evidence of state oversight

> Individuals and families can obtain information
> Intake and eligibility determination processes are understandable, user-friendly and assistance is available
> Referrals for people who need services but aren't HCBS-eligible
> Individuals given infornatuin to exercise choice, services initiated promptly

Person-Centered practices:
>> Services planned and implemented in an individualized manner
>> Plans address the needs for HCBS, healthcare and other services
>> Information and support is available to help participants make selections among service options and providers
>> Participants have the authority and are supported to direct and manage their own services to the extent they wish.
>> Participants have acces to and assitance with obtaining and coordinating services
>> Services are furnished in accordance with plan
>> Regular, systematic and objective methods are used to monitor the individuals well being, health status and the effectiveness of services
>> Significant changes in the person's needs promptly trigger modifications to the plan

Enough qualified providers
>>> Sufficient providers that demonstrate capacity to serve

>> Health risks and safety assessed and interventions identified
>> The safety of the paricipant's living arrangement is assessed, risk-factors are identified and modifications are offered to promote independence and safety
>> Safeguards are in place to protect participants from critical incidents and life-endangering situations
>> Behavioral interventions are subject to rigorous oversight
>> Medications managed effectively and appropriately
>> Safeguards in place in the event of natural disasters/ public emergencies

Respecting and supporting rights
Participants are informed, supported and receive training to
-exercise their rights
-exercise their decision-making authority
-exercise their medicaid due process rights
-register grievances and complaints

Self-direction supports
-Conduct criminal background
-Assist participant to identify/recruit staff, verify qualifications
-Provide training to participant in staff supervision, doocumentation
-Receive and verify staff time record
-Verify that services are within approved limits
-Operate a payroll system for staff compensation
-Submit medicaid claims for services furnished by participant-employed staff
-Arrange for emergency back-up services as necessary
-Notify appropriate entity concerning service provision problems or issues that require attention
-Assist participant in addressing staff issues or problems that require attention
Assist participant in addressing staff issues or problams including termination

Good Outcomes and Satisfaction
>> Participants and family members are asked about their satisfaction with services and supports
>> Services and supports lead to positive outcomes for each participant

Quality Management System:
>>> Systen engages in systemic data collection and analysis of program performance and impact
>>> The system supports participants of diverse cultural and ethnic backgrounds
>>> Participants have an active role in program design, performance appraisal and quality improvement activities Financial accountability is assured; payments are made promptly in accordance with requirements

Quality is your friend:

12:00 Questions
(skipping some)

Q. Does CMS consider generalizing outcome measurements from community-based services under the HCBS waiver to more institutional settings?
VA: I don't think so
BG: There are limitations in federal law from doing that [for now]

Q. One of the things we're seeing a lot of is turnover rate among front-line staff at providers [Yo! you didn't find turnover at ¡Arriba!. Worker's comp seems to be part of the problem- what can be done?
VB: States, not Feds responsible for Worker's Comp. Frontline staff are critical to quality.

A Newish Day: Welcome and opening Plenary session

8:45 Steve Perez, President of the Association of Regional Center Agencies (ARCA) gave a touching welcome as the grandfather of a girl my niece's age with the same diagnosis. A good start.

8:55 My friend, YB just walked in 10 minutes late. Just so y'all know.

9:00 Norman Kunc is giving the opening plenary.
"There is a categorical difference between the way non-disabled people see disability and the way most disabled people experience it."

"The main struggle isn't the struggle with the disability. The main struggle is with being identified as a person who is different."

Analogy: Imagine that you've saved up some money and you finally buy that piece of land where you're going to build your dream house to retire in. You build a beautiful house with four bedrooms and chandeliers and an ergonomic kitchen and the walk-in closets. Then the surveyor comes to examine the house and says it's beautiful and perfectly to code, but the bad news is, it's on your neighbor's land. And you say "No problem, we'll change the wallpaper.

Four ways to percieve disability:
Perspective Response
1. Deviance, Marginalize, A threat, segregate!
2. Deficiency Reform, fix the broken person. "I represent a normal part of human diversity"
3. Tragedy Benevolence Good quote- "Inclusion wasn't included in the social justice movement"
4. Diversity Support,innovation, value. Great quote: "Relationship delivers what rehabilitation promises."

"When you have a disability, innovation is a way of life."

>>>Being realistic isn't realistic

What we think is reasonable is often an unnecessary limitation.

Summary: Because the world is set up for non-disabled people, people without disabilities don't look for better ways to do things-"You do it the dumb way because you can." People with disabilities develop problem-solving skills and emphasize efficiency due to the higher cost of doing normal things. As a consequence, people with disabilities develop natural skills for innovation and creative task analysis. Society should take advantage of this.

This is a great start for the conversation we may or may not be about to have.

A Newish Day- Live from San Diego

My wireless connection seems to work here at the conference, so I'll take my notes on this site. Substantial impressions, embarassing quotations, anything that gets said that I think deserves repeating from the conference will be posted here as it happens, God, t-mobile and my battery willing.

Thursday, February 03, 2005

Self-Directed Services: And another thing!

It was raised today, again, about the barrier to using SD in a congregant setting (one in which more than one client is served the same way.) I have the deepest admiration for the minds and hearts of people who put together California's SD waiver and even why they chose to proscribe traditional services. Ultimately, though, the point of self-determination is the assumption that the client can decide what supports fit best. That makes it pretty hard to reconcile with regulations (proposed) that tell the client what not to decide fits best.

The strongest advocates for SD also tend to be the most passionate opponents of the traditional service system. As such, I'm on their side and trust them to be on mine. Nonetheless, it seemed like a pretty insular development process and the community hasn't been given a lot of time to digest and respond and argue for changes. I wish that were different. I think a good product could have been better and more honest had it been written more in the sunshine.

*** Correction -2/10/2005 ***
I have been told by a good friend, whom I trust, that significant effort was made to have the development process be open and transparent. Apparently, there was steering committee and anyone who inquired was meant to receive drafts and invitations. I certainly accept that pretty good outreach doesn't always mean everyone finds out about everything and that the process may only have seemed insular to those of us who were interested but didn't find our way into the mix. Apologies to anyone who felt the comment above was inaccurate or unfair.