The Arc Maryland commends DDA’s efforts to outreach state-wide to gain public input in the Community Pathways Waiver Amendment #2 process that includes waiver participants and other stakeholders to share their thoughts, concerns, and recommendations.
After listening to the concerns and suggestions throughout the state, The Arc Maryland would like to share the following comments and concerns:
We commend DDA for providing a wide variety of services under the waiver. However, children will no longer be able to obtain personal support, behavioral support or nursing support services. The Arc Maryland strongly opposes this action.
Although The Arc has been exploring a capped Family Supports Waiver with the Department, our initial support was predicated on the capped waiver as an addition to the array of options to children and families. Instead, it appears the department is eliminating key supports for children and families. A new capped Family Supports waiver will likely take at least two years to obtain; meanwhile children and families will be left with no supports unless eligible for EPSDT and they do not need services in addition to EPSDT. Throughout our meetings with DDA, we were assured the waiver would continue to be available for eligible children, with a new capped waiver as an option in addition to the comprehensive waiver. DDA’s stated philosophy to support families through a Community of Practice model is inconsistent with practice when the option for wavier supports is proposed to be eliminated. The Arc Maryland opposes the elimination of children from Community Pathways waiver.
Employment Discovery and Customization
Certain proposed requirements would undermine the effectiveness and purpose of a person-centered approach. Discovery and Customization is limited to a 4-hour minimum M-F. Certain jobs may exist only on weekends; customization may be required if different environments exist for a weekend or evening job.
We would like clarification under B. 6. If an Employment Discovery Profile is a prescribed, standardized profile or may any profile that meets the items identified in this section may be used. The concern with naming a particular tool is the need to change the waiver should different profiles and tools emerge as the field evolves in this area.
We would like clarification under H. if the mode of transportation must be both the least costly AND most appropriate means of transportation for the individual. We would like assurance that the mode of transportation is the most appropriate for the individual even if the mode is costlier.
We seek clarification if there are new and additional certifications required by staff beyond current law, which staff, and how will additional certification costs be paid? In addition, there is no billing mechanism for an individual who work less than 4 hours on the weekend.
Community Development Services
The purpose of these services is to provide opportunities to build social connections, life-long learning, etc. However, services are limited to M-Friday only. The Arc Maryland opposes this restriction as not being person-centered. Most social connections for adults without disabilities occur during weekends and evenings. The limitation of M-F schedule could result in greater segregation of individuals with I/DD if they are only provided supports during the weekday or will not result in sustained connections and support to maintain connections.
Community Personal Supports
The Arc has serious concerns with the requirement that Community First Choices program will provide personal assistance services for all individuals with I/DD. By nature, CFC personal assistance has been designed for physical assistance rather than supporting individuals to learn, be prompted or supported in non-physical ways to perform their own personal assistance. CFC has not proven to be developmentally appropriate in all cases, relying heavily on an elderly service model of ‘taking care’ and performing personal assistance rather than including the learning, prompts and other assistance that people with I/DD may require to become more independent. We urge the Department to reconsider the blanket requirement for personal assistance to be provided through CFC.
Transportation to enable people with I/DD to attend out of state conferences and training is a positive addition to the waiver. However, The Arc believes the $450 limit to attend out of state conferences or training is unreasonable. People with I/DD typically need additional supports as compared with their typical peers to attend and participate in conferences, including greater transportation costs in some cases, the need for additional on-site support for learning and true participation. Out of state conferences and training registrations and travel are typically greater than $450.
Maryland has traditionally viewed homes of four individuals as congregate care. The Arc expresses concern with the higher number of individuals permitted to live together. Maryland’s CSLA statute is based on the belief that people live in typical settings with non-related housemates. The Supported Living model as proposed in the amendment will set Maryland back to greater congregate care. We request clarification for private bedroom. Individuals sometimes prefer to share bedrooms with others.
Shared Living – Companion
The Arc is pleased this option is included in the waiver, including the cap on no more than three individuals receiving supports sharing the residence. In this vein, we do not understand the rationale for increasing the number of housemates to 4 individuals in Supported Living. The principles of age-appropriate and typical settings as non-disabled peers ought to apply for Supported Living as well. We request clarification that respite is available under this section.
The Arc commends the department for creating community-based secure residential options rather than institutions. May individuals who do not need the higher level of supervision reside in this type of program? Our concern is that people with security needs/ behavioral challenges could all be living together, modeling difficult behaviors for one another and not afford opportunity to live with someone without as high support needs or behavioral challenges of their choice.
Assistive Technology and Services
DDA should not limit children under 21 from enjoying equal access to services. The Arc requests clarification on the definition of “Medically necessary” assistive technology services for children under the age of 21. Children may have needs for technology beyond ‘medically necessary’ in order to learn to navigate their community, communicate, learn self-care skills, and develop connections with peers.
The Arc Maryland appreciates the opportunity to provide public input. We look forward to working with DDA to improve the quality of life for people with intellectual and developmental disabilities in our State.