Disability Rights-Hear our Voice

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.

We, the parents of children in self-directed program are given the minimum attention. My daughter left a group home and apartment program where she would have minimum input to her life. Now she has a real voice and can ask for what foods wants to eat, what clothes she wants to wear, what activities she wants to do on the weekends, etc. Drafting of amendment waivers without input from the parents is just the opposite of what is needed. DDA needs to give parents classes and information so we can encourage our loved ones to be as independent as possible. We need funding for activities and transportation costs. Internet is a need funding item since everything is cited on it.

We have participated in New Directions since 2009. As it has transitioned to Community Pathways we have seen the devaluation of family contributions and more and more regulations to exclude families. Not only is it sad, it is stupid because when the DDA budget is cut, the family needs to be there, strong and resilient. There is a reason that Ms. Clinton has included family caregivers as an essential part of her birth to death autism plan. DDAs job should be to strengthen the family caregiver role not detract from it. I think that Maryland had an ideal program in New Directions and DDA has not shone the data to prove widespread fraud and abuse in that program. They mandated changes that made little sense with little notice and all of a sudden we had Community Pathways. Now it appears to be happening again. Sometimes, I get so tired I just can't breathe.

Please keep this in place to help parents of disabled children.

I was born and raised in Md and used to live at; 162 Chesapeake Mobile Ct Hanover MD 21076 I know so many great parents with disabled children who really need this help. Please don't change it.

After 24 years of dealing with the incompetence of special needs schools and then adult day services for my son Kevin I was so thankful to find out about SDS. We are new to the program but know it will give peace of mind and after all the negative experiences we have had know it is the safest option. Kevin has cerebral palsy and epilepsy. No one knew how to deal with his seizures or were trained properly. He is now safe at home with me as his full time caregiver He is free to get out in the community and do the things he likes to do. For us family caregivers it comes down to needing to be with and care for our special needs children but also needing to earn a paycheck to take care of our families. With this program we no longer have to choose. Please do not change a good thing that is helping so many families.

I have seen countless individuals and their families helped through the ability to self-direct their services. If the clear goal is to provide services which are best for the participant, the changes proposed in Amendment 2 are once again to benefit the agency providers, not the participant. As with any program, there will always be those who abuse the system. However, as a Maryland resident and voter, the abuse of funds being handed to agency providers far outweighs any abuse in the self-directed program. Just because a state CAN make this change does not mean it should. In no way would not allowing family as staff help anyone except the providers who depend on the exploitation of these individuals in order to maintain their own business.

I quite agree with and support Brigid Cleary Davis's and Liam Davis's remarks.

My name is Brigid Cleary Davis and I am the mother of Liam Davis, a 26 year-old man with Down Syndrome. He lives at home with his father Brian and myself, and his brother Aidan, 23. I am Liam’s job coach and CSLA provider through Liam’s Self-Directed Services, as well as a free-lance actor, a job which allows me a certain flexibility in order to accommodate Liam’s schedule, and vice versa, when necessary. Liam is a thriving, happy, contributing member of society, and he has a support network in place that is of HIS choosing. He works at Safeway in Dunkirk as a courtesy clerk. He is active in Special Olympics and the Special Players of Southern Maryland. He participates in the Lower Marlboro Players’ Annual Christmas show. He has a girlfriend, and they enjoy dancing with Louise Pyles Special World of Dance, and he has made many friends throughout Calvert County. Liam has regular part-time work hours at the Dunkirk Safeway, although he also has flexibility in those hours, some day shifts, some evenings into night. He takes his job as courtesy clerk very seriously, and has worked very hard to be the welcoming face of Safeway. His own self-defined job description is to “make people’s day.” He has made friends with customers who come in day and night. They see him hard at work, an example of a successful working member of our community, and he is a gift to parents of younger children with Down Syndrome. Meeting Liam at Safeway has put a new grandparent or parent of a child with Down Syndrome a little more at ease, as they struggle with concerns about their own child’s future. By definition, SELF-DIRECTED services gives our adult children living with the challenges of disabilities the respect of trusting them to make their own decisions about who they want on their support team, and trusting them to voice when they are no longer happy with that team. Liam has experienced other options, but is excelling in the support system he built himself i

This program is the ONLY way that many of these special needs persons can get the help and assistance they need because other organizations reject them; or there are not enough organizations that can cope with the behavioral difficulties.

Our son has been in self-directed waiver since 2008. We tried traditional services for Robert but he was kicked out of one provider agency and the second did not support his needs are provide the staffing in his plan. I am very concerned about how Amendment 2 will affect his current Self Direction Services. I have listened to a number of the Webinars and they are not very transparent. After participating in a number of Employment 1st meetings, I am very concerned that they are Provider Focused and not address the needs of individuals that are Self-Direction.

I am the parent of a successful Four Year Self Directed Participant. I act as a unpaid support broker for the team. I have grave concerns about the proposed amendment 2 and believe it restricts the flexibility needed for true Person Centered Planning. I am glad to see this advocacy effort is underway. Self direction Advocates in Maryland have been unheard by the State and hopefully this will change. Karen Bowers LCSW

Parent of successful four year Self-Directed participant Jennifer Bowers.

Grandson

these folks need this because they are Self Directed

Self Directed Services MEANS self directed services, NOT dictated xservices. We have years more experience then you have and we lve it every day; so put our expertise to work .

I am requesting that DDA allow Self Directed Services to remain as they currently are. It is wrong to include these services with the services provided by agencies.

SDS is working. Please do not restrict it in any way. All services/supports should be able to be self-directed.

Self directed services have worked well for my sister. Want them to remain the same!