Comments on MI State Transition Plan for HCBS : Part I

Comments on Michigan's revised State Transition Plan for Home and Community-Based Service (HCBS) are due on 1/22/2016. 

For more information, including links to relevant documents, see the notice from the MI Department of Health and Human Services. 

Here is helpful information from the Coalition for Community Choice: Guidance for States Implementing the 2014 Home and Community-Based Services Rule

This is the first part of my comments submitted to the Michigan DHHS:

I have two adult sons with profound intellectual and developmental disabilities who receive services funded by Michigan’s Habilitation Supports Waiver for people with developmental disabilities. They live in a group home with four other people with similar disabilities. They attend an activity program run by a non-profit organization for people with moderate to severe disabilities, which is paid for privately and not with HCBS Waiver funds.

My older son has lived in his group home for more than 18 years. Although the quality of care has varied, the problems we have encountered are not inherent to the group home structure. They are more often related to poor pay for the staff with, at times, high staff turnover, a lack of incentives to retain competent and committed direct service workers, and other external pressures associated with funding that affects the Community Mental Health system as a whole.

I have seen many improvements in the group home over the last ten years. The home is managed well and the staff does a good job of taking care of people with complex medical needs who are also non-verbal and severely intellectually disabled. My sons have transportation available to them to get to their activity program and all medical appointments and other activities that my husband and I, as their legal guardians, would like them to participate in. The group home does not impose a rigid schedule on residents for the convenience of staff. Staff members, however, follow a flexible schedule to provide daily care for our sons for such things as bathing, other personal care, medications, and feeding, including tube-feeding for my older son. 

Most important to my husband and me is the extent to which the group home and staff are supervised and monitored. Supervision and monitoring does not usually occur to the same extent in unlicensed settings that some would consider more integrated into the community. A setting such as an apartment in subsidized housing would impose extra burdens on our sons by removing them from a safe and accepting environment appropriate to their needs and reduce their opportunities for meaningful interactions with other people. It is doubtful that such a move would save money, as both of my sons would still require the same services, but would also need a one-to-one staff ratio 24/7 just to ensure their safety and to provide basic care.

My sons are well taken care of and happy with their current circumstances. We see them several times a week and monitor their care to make sure they are getting what they need.

My sons are part of a community of family, friends, and caregivers who accept them for who they are and who are respectful of their needs. In instances where my sons have not been treated well or caregivers were found to be less than competent, my husband and I, as their guardians, have always taken all measures available to us to correct problems quickly and to assure that their rights are respected.

My general recommendation is that the State interpret the federal Home and Community-Based Services (HCBS) rule in a way that respects the individual differences and preferences of the people receiving waiver services.

Will the state implement the rule with enough flexibility to avoid imposing changes on disabled people and their families that are unwanted or conflict with the safety, welfare, and medical needs of the individual? To what degree will people with disabilities and their families continue to be the primary decision makers as described in the federal Development Disabilities Assistance and Bill of Rights Act:  “individuals with developmental disabilities and their families are the primary decisionmakers regarding the services and supports such individuals and their families receive, including regarding choosing where the individuals live from available options, and play decisionmaking roles in policies and programs that affect the lives of such individuals and their families.” [from The DD Act, policy #3]?