Statewide Transition Plan Comments

Comments of Dan Keating, PhD
Executive Director

To: The Department of Human Services
Re: Statewide Transition Plan
February 4, 2015
Trenton, New Jersey

Good morning Deputy Commissioners Apgar and Arye. I appreciate the opportunity to appear before you today to provide comments on the Draft Statewide Transition Plan.

I am Dan Keating, the Executive Director of The Alliance for the Betterment of Citizens with Disabilities (ABCD). ABCD represents providers of supports and services to individuals with significant medical, physical and behavioral challenges throughout New Jersey.

ABCD supports the intention of CMS and DHS “to enhance the quality of HCBS and to provide protections to participants.” We embrace the idea that “service planning must be developed through a person-centered planning process…that addresses health and long-term services and support needs in a manner that reflects individual preferences and goals.”

In the state’s draft plan, you state that “CMS has moved away from defining HCBS settings based on specific locations, a certain geography or physical characteristics. The HCBS setting requirements establish an outcome-oriented definition that focuses on the nature and quality of the individuals’ experiences.”

It is with the above in mind that I would like to share comments today. I would like to suggest that the state’s plan could more fully support a person to achieve his or her “individual preferences and goals” if the policies and regulations focused more on individual outcomes achieved through the supports and services received and less on the settings. We would do well if the providers of supports and services were asked to demonstrate that individuals have had access to seek employment and work in a competitive and integrated environment; engage in community life and control personal resources with the same access to the community as people not receiving Medicaid HCBS.” Incentives should be offered for demonstrating that individual initiative, autonomy and independence in making life choices have been attained, rather than requiring in what kind of settings one should obtain supports and services.

For example, in the “State Crosswalk Results: Community Care Waiver: Day Services: For facility-based day programs section” (page 24) it is stated “…individuals should spend at least 75 percent of their time in activities in the community, not at the facility.” It is not clear how the 75% was chosen. There may be legitimate clinical and practical reasons why this may not be appropriate for individuals with significant medical or physical complications. Individuals who have compromised immune systems or the need of mechanical assistance to change clothing or use toilet facilities may not be physically able to move back and forth from the community to the program as necessary to accomplish being in the community 75% of the time. If this is reflected in the person-centered plan or individual service plan, what becomes preeminent: the 75% community requirement or the team approved plan?

In the “State Crosswalk Results: Community Care Waiver: NJAC 10:44A and the Federal Rule section” (page 21) it is stated that “DDD will modify its regulatory and licensing requirements, as well as its policies, to ensure that in settings serving more than four individuals (or six with DDD approval…), no more than 25 percent of units are specifically set aside for individuals with disabilities.” What is the magic number? If an individual is working, volunteering, engaging in leisure pursuits; in other words, demonstrating an inclusive lifestyle supported by a provider, isn’t that the ultimate goal?

We would ask that more emphasis be on the attainment of the outcomes preferred by the individual. It should be the quality of the life, the attainment of an inclusive life that should be measured. Incentives should be on the attainment of outcomes chosen by the individual.

Additional comments would include:

  • One of the things that does not appear to be emphasized is training for individuals with disabilities, their families and staff members of providers that will be necessary for full compliance with the community rule.
  • The plan is silent on transportation. Enhancement of community transportation options for individuals with disabilities will be necessary to accomplish the full inclusion of individuals with significant physical challenges in the community.
  • We would like to request an elaboration of the DDD “site specific evaluation of every licensed residential setting, which will be conducted by DDD staff.” In the spirit of transparency, we would like to have an opportunity to review the assessment tool that will be used and be afforded opportunities to provide information that will expand the objectivity. We would like to have some input from those receiving the supports and their families. Furthermore, we would like an opportunity to review the data and analysis.
  • The timelines for accomplishing all objectives appear overly ambitious. We are converting to a fee for service environment and standing up the Supports Program at the same time as we look to comply with CMS’s Community Rule. Unexpected occurrences can delay the processes. We request that the time frames be reviewed and adjusted over the four years that CMS has given for full compliance.
  • Finally, we request that DDD convene a stakeholder advisory group to meet regularly over the course of the transition period.

In conclusion, changing the culture of an organization is a multi-year process. Changing a system is even more so. We are involved in a massive culture shift. The people that we support count on us to get it right. It is incumbent on us to take the time to evaluate the process regularly and make corrections as necessary.

Thank you again for the opportunity to share our comments with you today. We look forward to partnering with you to accomplish compliance with the CMS community rule.

Respectfully,

Dan Keating, PhD
Executive Director