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Autistic Self Advocacy Network Re: Person Centered Planning and Practice Project Final Report

May 15, 2020

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Administration for Community Living (ACL)

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Autistic Self Advocacy Network Re: Person Centered Planning and Practice Project Final Report

Question 1: Do you have any suggested changes to the person-centered planning and practice measure framework? 

The Autistic Self Advocacy Network appreciates the opportunity to provide comments on the National Quality Forum (NQF) Person Centered Planning and Practice Committee’s Final Draft Report. 

ASAN supports the overall structure of the person-centered planning and practice measurement framework. The three domains listed accurately capture what should be measured when determining the degree to which a particular PCP method adequately supports beneficiaries’ right to control their services – and thereby the course of their lives. Nonetheless, the final report text does not appear to adequately consider the amount and kind of information that should be considered in each domain. ASAN makes the following recommendations. 

ASAN recommends that the person-reported outcome performance measures (PRO-PMs) subdomain be significantly expanded. The PRO-PMs subdomain is one of the most vital performance measures for person-centered planning, as it evaluates whether the process is working from the perspective of the beneficiary. The current subdomain in the framework does not capture important aspects of person-centered planning as viewed from that perspective. The PRO-PMs subdomain should include, at a minimum, mandatory questions that ask: 

  • whether or not the beneficiary believes they have sufficient support to engage in person-centered planning; 
  • whether the beneficiary believes their person-centered plan is being followed; 
  • whether the beneficiary believes they have sufficient freedom of choice and self-determination in their own lives; 
  • whether the beneficiary believes they have been provided with a diverse variety of choices as to the kind of supports they will receive and where they will receive them; 
  • whether the person has access to effective communication during the person-centered planning process, including augmentative and alternative communication (AAC) technology, communication aides, and any extra time or specific supports necessary for that communication. 

Asking the beneficiary directly about the support they receive and the self-determination they have acquired from the person-centered planning process is important for determining the degree to which any given person-centered planning method enhances either. 

ASAN urges the Committee to eliminate the bullet point which would require the person-centered plan to be written “using first person language” and in the person’s own words. Universal application of this approach is exclusionary toward people who have difficulty with expressive language and creates a significant danger that supporters will simply write their own plan in the first person and falsely ascribe those words to the individual. Such a practice is antithetical to the core values of self-advocacy. When communication barriers require facilitators to make inferences about a person’s interests, goals, and preferences, these inferences – and the bases for them – should be documented in the plan rather than simply having the facilitator speak in someone else’s voice. The plan should nevertheless be written in plain language so that the beneficiary of the plan can understand it. 

ASAN recommends, in the “Communication” subdomain of the PCP Facilitation Measures domain, that the second bullet point specifically reference Augmentative and Alternative Communication (AAC) and plain language as alternative forms of communication. “Hearing and other communication tools” does not cover the full breadth of communication methods the facilitator might need.

ASAN recommends that the “System-Level Measures” domain be slightly revised to prevent excessive case manager caseloads. Specifically, ASAN recommends that the third bullet point under the structural subdomain be revised to state “There are enough resources allocated that those who work within the system are able to avoid excessive caseloads and effectively provide person-centered planning and services.” 

Question 2: Do you have edits for the person-centered planning research agenda? 

ASAN supports the overall content and themes in the research agenda. ASAN is pleased that the Committee is also concerned with the paucity of research data on the effectiveness of person-centered planning as a whole, the effectiveness of different person-centered planning methods, and the lack of an empirical research base on person-centered planning for people with significant intellectual and developmental disabilities and/or communication-related disabilities. The comments below describe edits which could broaden the scope and quality of the research agenda. 

ASAN agrees that researching the adequacy and accuracy of person-centered planning performance measures, including those referenced in the final report, is a vital subject for further research. A failure to research whether measures of quality for person centered planning are reliable, valid, and can be implemented essentially renders the quality measures useless. ASAN recommends that research focus on those quality measures that examine beneficiary experiences, such as those included in the PRO-PMs subdomain. As these features investigate the usability of person-centered planning, they are the measures most likely to be determinative of its quality. 

ASAN recommends that research on the impact of person-centered planning on outcomes for people with disabilities include additional outcomes concerning community inclusion, choice, and control. The impact of person-centered planning of LTSS on a person with a disability’s integration into their community has not been sufficiently studied and would benefit from additional research. It is almost inevitable that these factors would have some impact, as without LTSS many of us cannot live in the community at all. ASAN’s thematic analysis and the other documents produced during its May 2018 Community Living Summit discuss the importance of LTSS to community integration for people with I/DD in greater detail. 

Researchers could also study the impact of person-centered planning on the degree of choice, control, and self-determination beneficiaries exercise in their lives. Researchers could survey person-centered planning beneficiaries as well as their caregivers, friends, and family and ask specific questions about the degree of control they have over where they receive services, what those services are, and how the receipt of services improves the number of things they are able to do and enjoy. 

ASAN recommends that the bullet concerning “treatment adherence and recovery” be revised or eliminated. “Compliance” with treatment should not be a goal of person-centered planning–indeed, such a framing is antithetical to the values underlying person-centered planning. Additionally, many disabilities (such as intellectual and developmental disabilities) cannot be recovered from or “treated.” Moreover, “treatment adherence” in and of itself is not independently as important as a person’s overall physical and mental health outcomes, which are already accounted for in the second bullet point.

ASAN recommends that researchers specifically inquire about the impact of person centered planning on outcomes for several subgroups of people with significant disabilities, including: people with significant intellectual disabilities, people with high support needs, people who require significant support in order to communicate, and people with what is commonly referred to as “challenging behavior.” There is even less empirical research concerning how person-centered planning impacts subgroups of people with I/DD that may need higher support during the process. Similarly, ASAN requests that these groups be listed as groups that the research agenda recommends population-specific research be performed on to identify disparities and special considerations for service planning.

Question 3: Are there comments on the person – centered planning definition, core competencies or systems characteristics? 

ASAN continues to have significant concerns with both the language and the structure of the person-centered planning definition, core competencies, and systems characteristics. Specific comments are outlined below. 

ASAN repeats its recommendation that the “active and reflective listening” core competency be revised or removed so that it does not disqualify people with disabilities as possible facilitators on its face. It also recommends that the “empathy” core competency be revised to consider the possibility that the facilitator themselves has a disability. The “active and reflective listening” language states that the facilitator must “use body language and responses that demonstrate their consideration and understanding,” as well as “act as a mirror or reflection of the speaker to optimize their communication.” Both using body language and mirroring the actions of another are difficult for many people with I/DD, including autistic people. Nonetheless, facilitators with I/DD may be otherwise perfectly capable of demonstrating care and understanding in other ways. 

Similarly, the final report states at multiple points that “empathy” is critical for person-centered planning. At one point, the final report states that empathy is needed for “forming an understanding of and articulating the person’s desires, goals, needs and wants…” While this is entirely true, when combined with the “active and reflective listening” bullet point the report appears to imply the specific communication methods that facilitators should use to achieve empathy — methods which would be difficult or impossible for a facilitator with I/DD. The report should revise the “empathy” bullet point to note that multiple means and communication methods and styles may be used by empathetic people. Furthermore, the report should clarify that stereotypes about certain disabilities should not be used to prevent people with those disabilities from serving as facilitators.

ASAN urges the Committee to revise and reconsider language in the final report which implies that beneficiaries should not be allowed to make poor choices or choose to take risks that are “unreasonable.”  Specifically, ASAN urges the Committee to eliminate all remaining language that implies that the dignity of risk needs to be “balanced” with the person’s supports, such as the language present on pg. 23, as well as language qualifying the dignity of risk as the right to take “reasonable risks” on pg. 14. People with disabilities may and should have the absolute right to refuse a particular service or support when they feel that that service or support impedes on their personal freedom and self-determination. Additionally, ASAN urges the Committee to remove all references to “balance,” reasonableness, and other words which convey that providers should attempt to limit or eliminate the kinds of choices that can be made and risks that may be taken by beneficiaries. 

ASAN reiterates that dignity of risk is an absolute, unqualified right to make any choice in one’s life that does not harm another person. It is not the right to make only “reasonable” choices or take “some” risks. A person’s right to make their own choices should never be qualified or altered for the sake of their supports. Instead, the supports provided to the person should exist to facilitate their choices, including the process of ensuring the person has knowledge of the risks and benefits of a potential choice. The right to choose and reject support is a core aspect – indeed, the entire point- of the person-centered planning process. The final report’s language should reflect it. 

ASAN recommends that a bullet point on the self-advocacy movement be added to the list of relevant philosophies on disability under “Contextual Philosophy.” The self-advocacy movement is an important part of the lives and cultural context of many people who receive LTSS. A core element of self-advocacy is the assumption that people with disabilities are the best experts on their own needs and goals. Facilitators should therefore at least be aware of the basic tenets of disability self-advocacy, especially when working with people with I/DD. 

ASAN urges the Committee to revise the “Systems Characteristics” section so that it accurately describes the connections between person-centered planning and the implementation of LTSS. Person-centered planning is not a goal in and of itself, nor does it exist in a vacuum. Instead, person-centered-planning is a component of service delivery that allows the beneficiary to determine which services they receive and how. Medicaid-funded HCBS services, for example, must be delivered according to the dictates of an individual’s person-centered plan. Nonetheless the final report repeatedly and generically references person-centered planning concepts without sufficiently connecting person-centered planning with the actual implementation and delivery of long-term services and supports.

For example, one of the systems characteristics considered important to person-centered planning in the final report is leadership. The final report states that leadership should have a “clear vision and strategy for delivering person-centered practices, including PCP,” but does not explain what “person-centered practices” are in this context outside of person centered planning. The final report emphasizes that leadership should provide training opportunities to staff on person-centered practices and that the degree to which staff use person-centered practices should be evaluated regularly as part of an organization’s quality improvement activities. But, crucially, the report fails to connect these activities to the outcome for the person with a disability–ideally, a person-centered plan which is implemented faithfully, with high-quality services and supports delivered in a respectful and individualized way, leading to more choice and control and a higher quality of life for the person with a disability.  

With respect to the standards state agencies should use to monitor person centered plans, the final report fails to state that the monitoring agency should also monitor how  the person centered plan is being implemented by providers on a day to day basis. Examples of implementation include: how the person is treated by their providers, whether the services provided match the person-centered plan, and whether the person’s wishes and preferences as stated have been respected. 

In short: without a direct correlation between the promotion of the systems characteristics and the quality of the beneficiary’s experience, the systems characteristics amount to nothing more than unnecessary meetings and lip service. The final report often uses superfluous jargon to mask its lack of content,  such as in the absurd clause “the importance of person-centered practices as a means to reach the vision and promise of person-centered thinking, planning, and practice.” 

There are some sections of the final report that at least reference barriers to the implementation of a person’s person-centered plan. The barriers referenced are built into the way in which present-day LTSS providers deliver services, such as specific meal and bathing times in nursing homes, fixed care task lists, and other routine-oriented approaches to care. These sections have improved in quality since the interim report was released. The final report also – critically – references the need for flexible financing design for LTSS that can account for the individualized structure of person-centered plans. The report also recommends a No Wrong Door approach to funding services, which ASAN supports. Nonetheless, ASAN strongly recommends that the Committee revise this section to better cement the connection between the person-centered plan and actual service provision. 

ASAN recommends that the “Barriers and Opportunities” systems characteristic be significantly revised to include significant barriers to person-centered plan implementation which are not mentioned. The section only mentions state-level barriers and a failure to embrace the “characteristics and values” of person-centered planning. The Final Report entirely fails to mention: (1) lack of funding; (2) societal ableism; (3) a lack of implementation of the HCBS Rule as written at the state level and a delay in the Final Rule’s full implementation; (4) the LTSS workforce crisis including low pay, high staff turnover and an unconscionably  high person-to-service professional ratio; (5)  systemic reliance on congregate settings and institutions whose policies make adherence to a plan virtually impossible; (6) lack of effective communication with the person including AAC. Additionally, there are systemic barriers that are not rules but instead assumptions and prejudice, such as staff expectations, biases, and actions that undermine the person-centered plan. For example, a person-centered plan is useless if the person’s service providers do not follow the plan because they believe that the person they support is incompetent. These are only a few of the significant barriers to implementation of person-centered planning. 

ASAN remains concerned about the cognitive inaccessibility of the person-centered planning definition in the final report. The definition in the final report still uses the terms “you” and “your” to describe its audience, indicating that the definition is meant to be read and used by long term services and supports (LTSS) beneficiaries. Nonetheless the definition’s text contains complex words such as “facilitating” (included before “facilitation” is defined) and “approach.” The definition also contains multi-clause, long sentences throughout, which are difficult for many people with I/DD to read. As ASAN noted in its comments on the interim report, this aspect of the definition’s structure renders it effectively inaccessible to one of the major categories of LTSS beneficiary: people with cognitive disabilities, for example people with intellectual disabilities. ASAN urges the Committee to consult with skilled plain language translators and experts prior to the finalization of the draft report in order to reduce the reading level of the definition at least to a 6th grade level. The Committee should also consider creating an easy-read version, with visual aids, that contains the same information.

ASAN recommends that the report revise the “informed decision-making” core competency to account for the different learning styles that people may have. A person with a disability cannot expect to make informed decisions unless they understand what the facilitator is telling them about the decision they need to make. This bullet point should note that all people learn information differently and that the facilitator should account for how the beneficiary communicates and learns when helping them make informed decisions. 

ASAN recommends that the core competency “understanding disparities” be changed to “understanding the participant’s cultural, ethnic, and racial demographics and how these impact person-centered planning.” The characteristics described (race, gender, sexual orientation, disability, etc.) may indeed lead to disparities in access to appropriate healthcare and LTSS, but they are not disparities in and of themselves. 

ASAN once again urges the Committee to revise the “negotiation” core competency so as to be clear that the facilitator should never view the person’s disability as a barrier to effective negotiation. The final report’s language on the negotiation core competency states that the facilitator should “elicit all challenges and barriers including … mental and behavioral disorders including substance use disorders.” This language is still offensive and inappropriate and ASAN urges its removal. 

ASAN recommends that the Committee revise some of the language in the definition to better conform to the Committee’s goal of enhancing person-centered planning and self-determination for people with disabilities. On pg. 7, when the report states that a “positive approach” means that person centered planning should be “based on what you are good at or like,” ASAN recommends that the report also state, “Your supporters should believe that you can do things until you tell them you can’t. Your supporters should help if you are having trouble. Your supports should help you do the things that are most important to you.” This language better articulates the notion of presumption of competence to beneficiaries. 

On pg. 8, “career exploration, education, and employment” should be revised to read, “the school you already go to or want to go to and any jobs you want or already have,” to clarify the meaning of these three terms. 

On pg. 8, when the document states that you have “the right to … take some risks in trying new things,” the document should remove “some,” as the person should have the right to take any risk. On pg. 8, when talking about “limits” placed on decision-making, the section should instead state that “Sometimes you might decide that you need help to stay safe. You still have the right to make decisions. Some rules that are about this right, like the HCBS Final Rule, should be explained to you at the meeting. If you are worried that your team is not respecting your right to make decisions, you can call your Protection and Advocacy agency (P&A). There are P&As in every state. You can find your P&A at:  https://www.ndrn.org/about/ndrn-member-agencies.”

ASAN recommends that the “Knowledge: Policy and Regulation” be revised to better reflect the true meaning of these statutes.  The final report states, concerning the Americans with Disabilities Act, that facilitators should “be familiar with… public entity prohibitions at the local level including transportation, access, and public housing,” as well as “public accommodation requirements for persons with disability.” ASAN recommends that this language should be changed to refer to “requirements” instead of just prohibitions, and so that it is noted that the ADA’s Titles contain differing prohibitions and requirements. ASAN additionally recommends that the Fair Housing Act should be described in a separate bullet point. 

ASAN recommends that the section referring to the IDEA be revised to add that the goal of FAPE is to “to ensure that all children with disabilities have available to them a free appropriate public education … designed to meet their unique needs and prepare them for further education, employment, and independent living.” ASAN recommends adding a bullet point discussing the Health Insurance Portability and Accountability Act (HIPAA), a statute critically important for facilitators who are viewing and potentially transmitting the beneficiary’s private health information to others. The section concerning the HCBS Final Rule should be revised to reflect that the Final Rule includes person-centered planning requirements, the core focus of the final report.

Additionally, ASAN recommends that the section concerning the 21st Century CURES Act be revised to use neutral language. While the final report praises the 21st Century CURES Act as “updating the direction of mental health and substance use disorder treatment in the nation,” the bill includes several emphases which take control away from people with mental health disabilities, contrary to the goals of person-centered planning. The language should therefore be changed to read “This act includes several provisions concerning mental health and substance use disorder programs.”

ASAN recommends that the final report be revised to remove unnecessary jargon that clouds the very points the report is intending to make. ASAN additionally recommends that the final report remove repetitive sections. With respect to jargon, for example the report repeatedly uses the phrase “effective freedom” and “applying effective freedom” to refer to the fact that person-centered planning is meaningless without proper implementation of the person-centered plan, as well as access to the financial and human resources to do so. Both the term and the definition supplied by the report are difficult to understand and could be far better articulated by simply saying “putting choices into practice” or something along those lines. 

The report uses odd terminology when describing other fundamental ideas and concepts as well. Occasionally, the title of the section is a misused word even when the description of the idea itself is more than adequate. For example, the final report uses the word “negotiation” to refer to the ability to identify barriers to the implementation of a person-centered plan and to help the individual overcome those barriers. It uses “engagement” to refer to the process of providing the beneficiary with knowledge of the risks and benefits of various options before them. In both cases, the word used does not match the core competency that the final report is describing and thereby obfuscates the true meaning of the passage. 

The report also repeatedly uses the phrase “health literacy” to refer to the specific beneficiary’s health care knowledge. At one point the final report refers to enhancing health literacy as a core competency related to communication that the facilitator should have — which makes little sense if the beneficiary themselves can sometimes become their own facilitator. ASAN opposes the notion regardless that enhancing the beneficiary’s knowledge of the healthcare system should be a core characteristic of facilitation. A person’s person-centered planning team should support the beneficiary’s right to direct the course of their own services regardless of their degree of health literacy.  

ASAN also recommends that the report remove repetitive sections. For example, the “Quality and Innovation” section duplicates several of the report’s opinions on stakeholder participation and organizational reform, which are described only a few pages earlier. ASAN recommends that the finalized report eliminate these redundancies. 

Question 4: Do you have general comments on the report? 

ASAN supports the Committee’s revisions to the report text since the first interim report – which better emphasize the importance of the dignity of risk and the participant’s absolute and unqualified right to direct and control the services they receive. Nonetheless, the Final Draft Report still has many deficiencies. It fails to define or outline a means of determining what high-quality person-centered planning looks like in practice. It uses concepts and language which would effectively restrict the role of facilitator to people without disabilities instead of people with I/DD ourselves. It continues to use dangerous language that appears to suggest that beneficiaries are only allowed to take reasonable risks, rather than all risks. These aspects of the report continue to give it a provider-centered – rather than person-centered – focus. 

ASAN urges the Committee to significantly revise the Final Report to keep the focus of its recommendations on the significant, systemic changes that will be necessary to fully implement person-centered planning wherever LTSS are delivered. For more information on ASAN’s positions with respect to person-centered planning and practice, please contact Sam Crane, our Director of Legal and Public Policy, at scrane@autisticadvocacy.org

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