Amendment 2 is officially off the table. We forced them to listen and rewrite the plan.
October 1, 2016
Final supporters
A Petition from Self-Directed Participants, their families and advocates to Md. DDA Director Bernie Simons, Governor Larry Hogan and Andy Slavitt, Acting Administrator for the Center for Medicare and Medicaid Services.
The Maryland Developmental Disabilities Administration’s proposed Amendment 2 to the HCBS Community Pathways Waiver will reduce person-centeredness, flexibility, family involvement and cost-effectiveness for current and future Self-Directed Services participants. Furthermore, in relation to SDS participants DDA has been unable to observe the spirit of CMS guidelines for transparency and stakeholder input. I request that DDA rewrite Amendment 2 so that all Self-Directed Services remain as they are now. I also request that DDA form a self-directed services workgroup which would include a majority of authentic SDS stakeholders-- participants, family members and advocates-- who could develop alternatives to DDA’s current proposal. Possible solutions include the following:
1 Reserving all changes to Self-Directed Services for the proposed Amendment 3-- after careful consideration from the SDS workgroup and input from SDS participants and families.
2. Returning the Self-Directed Services model to its own separate Waiver which would be rewritten by the workgroup and reviewed by SDS participants and families.
Although SDS participants represent a minority of DDA participants, they have led the way for people with developmental disabilities, demonstrating that purposeful activities and community integration are achievable goals -- even for people with severe disabilities. Overlaying a web of regulations designed to fix the flaws in traditional programs on a thriving SDS program is nonsensical—and inherently wrong. DDA’s move to improve the lives of people with developmental disabilities is praiseworthy. However, in its surge to transform traditional services, DDA must ensure that the outstanding programs of self-directing individuals do not wind up as acceptable collateral damage. To read some of the stories of the participants and how their lives have changed please visit http://marylandsds.org
Updates
Reached 250 supporters
September 20, 2016
September 19, 2016
Meetings are happening behind the scenes to challenge these proposed changes. Your support provides the leverage we need to keep pushing for a seat at the table.
September 14, 2016
100 signatures reached. This is just the beginning.
Reached 100 supporters
September 11, 2016
65 Comments
My son has done much better under self-directed services as it was-allowing him to hire relative or staff he wants. Please do not move us back to institutionalization!
Not having this money for the families that need help around the clock help. This must not happen! The families want to have their child at home, but need some extra help, sometimes to just sleep thru the night without being woken up by a 2am feeding. Just 1 example.
It is already difficult to provide a quality of life for my son and give him a life with choices. To change the self directed services that would limit his options even more would create a long term burden for everyone and change his quality of life even further.
Self-directed services benefit participants whose needs don't fit the mold of outside service providers. They also save taxpayer's money. We ask that you reverse all changes and return the SDS model to it's own separate waiver. Let SDS participants and families have a voice and a presence in their own care.
The purpose was for our children to become "self directed" This is denying them the right to decide and making life so much more complicated and difficult for every person involved. Has the purpose changed? Will our children be reduced to an institution making decisions for them? This is a huge step backward for our families.
As the brother of 2 young adults with disabilities this concessions me.I believe most people don't understand the needs of people with disabilities.for example my brother is none verbal and not toilet trained and wears diapers so who ever takes care of him will have to wipe him cause of that the ARC of Maryland turned him down.
My child health and safety depends on the waiver staying like it is. I can provide documentation to the reasons why.
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Amendment 2 is officially off the table. We forced them to listen and rewrite the plan.
October 1, 2016
Final supporters
A Petition from Self-Directed Participants, their families and advocates to Md. DDA Director Bernie Simons, Governor Larry Hogan and Andy Slavitt, Acting Administrator for the Center for Medicare and Medicaid Services.
The Maryland Developmental Disabilities Administration’s proposed Amendment 2 to the HCBS Community Pathways Waiver will reduce person-centeredness, flexibility, family involvement and cost-effectiveness for current and future Self-Directed Services participants. Furthermore, in relation to SDS participants DDA has been unable to observe the spirit of CMS guidelines for transparency and stakeholder input. I request that DDA rewrite Amendment 2 so that all Self-Directed Services remain as they are now. I also request that DDA form a self-directed services workgroup which would include a majority of authentic SDS stakeholders-- participants, family members and advocates-- who could develop alternatives to DDA’s current proposal. Possible solutions include the following:
1 Reserving all changes to Self-Directed Services for the proposed Amendment 3-- after careful consideration from the SDS workgroup and input from SDS participants and families.
2. Returning the Self-Directed Services model to its own separate Waiver which would be rewritten by the workgroup and reviewed by SDS participants and families.
Although SDS participants represent a minority of DDA participants, they have led the way for people with developmental disabilities, demonstrating that purposeful activities and community integration are achievable goals -- even for people with severe disabilities. Overlaying a web of regulations designed to fix the flaws in traditional programs on a thriving SDS program is nonsensical—and inherently wrong. DDA’s move to improve the lives of people with developmental disabilities is praiseworthy. However, in its surge to transform traditional services, DDA must ensure that the outstanding programs of self-directing individuals do not wind up as acceptable collateral damage. To read some of the stories of the participants and how their lives have changed please visit http://marylandsds.org
Updates
Reached 250 supporters
September 20, 2016
September 19, 2016
Meetings are happening behind the scenes to challenge these proposed changes. Your support provides the leverage we need to keep pushing for a seat at the table.
September 14, 2016
100 signatures reached. This is just the beginning.
Reached 100 supporters
September 11, 2016
65 Comments
Part of my obligation as a parent of a developmentally disabled individual is to support and advocate on her behalf. She has a right to choose. She chose to Self direct. I support her. Honor that choice...Take SDS out of Amendment 2.
My son has done much better under self-directed services as it was-allowing him to hire relative or staff he wants. Please do not move us back to institutionalization!
Not having this money for the families that need help around the clock help. This must not happen! The families want to have their child at home, but need some extra help, sometimes to just sleep thru the night without being woken up by a 2am feeding. Just 1 example.
It is already difficult to provide a quality of life for my son and give him a life with choices. To change the self directed services that would limit his options even more would create a long term burden for everyone and change his quality of life even further.
Self-directed services benefit participants whose needs don't fit the mold of outside service providers. They also save taxpayer's money. We ask that you reverse all changes and return the SDS model to it's own separate waiver. Let SDS participants and families have a voice and a presence in their own care.
The purpose was for our children to become "self directed" This is denying them the right to decide and making life so much more complicated and difficult for every person involved. Has the purpose changed? Will our children be reduced to an institution making decisions for them? This is a huge step backward for our families.
As the brother of 2 young adults with disabilities this concessions me.I believe most people don't understand the needs of people with disabilities.for example my brother is none verbal and not toilet trained and wears diapers so who ever takes care of him will have to wipe him cause of that the ARC of Maryland turned him down.
My child health and safety depends on the waiver staying like it is. I can provide documentation to the reasons why.
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Part of my obligation as a parent of a developmentally disabled individual is to support and advocate on her behalf. She has a right to choose. She chose to Self direct. I support her. Honor that choice...Take SDS out of Amendment 2.