Remarks Submitted to the Transformation Panel May 19, 2015

Questions in .pdf format: ? from audience 5.19.2015

1.

SELF-DIRECTION:

Great program! Also very hard to understand why NYC has not had a training in over a year I am going to Long Island on May 22nd to get trained. This is not okay. How are families supposed to learn and implement self-direction? Thanks!

2. If government wants to offer more choices and more options won’t it cost more money? How can that be if government wants to actually spend less? They are polar opposites aren’t they?

3. Why in the name of ‘uniformity” are you doing away with local county single point of entry? GROW

4. There seems to be a double standard with restrictions as they pertain to waiver programs versus private non-profit programs. What is allowed for waiver is not allowed for private non-profit programs; i.e transition i.e. extra staff

5.How can parents or family members become involved?

6. What consists of “community” cannot be defined by a government entity.

7. How positive “total integration” is, cannot be determined by a government entity.

8. In the October Transition of Self-Direction my daughter’s PRA was cut more than $300K and services provided by clinicians were capped far below what they actually cost. The portion of her budget that was lost is being “covered” by continuity of care. But the implication is that at some point we will lose this continuity of care. If we do, self-direction is meaningless to us. We will be back where we started.

9. I have a child attending an NPS in Westchester and we live in the Bronx. The schools receive services for families in Westchester and in Manhattan but they do not have resources for families in the Bronx. I’ve been told there are not resources from OPWDD for families there knowing that the need is great please let me know what we can do to advocate for more resources for families in need – after school, recreation, respite, behaviors etc.

10. Why is OPWDD only giving money towards residential placement for “priority” placement “ i.e. children aging out of residential schools and people housed in NYS developmental centers that are closing? What about placement of individuals with aging parents? Do we have to be incapacitated or drop dead before our loved one is placed?

11.Why are brick and mortar day habilitation programs not being expanded for the many children aging out of school who are unable to work or are unable to be constantly in the community? (Day Hab without Walls)

12.Not all individuals are able to be employed in competitive employment. How is OPWDD going to supply behavior support for those individuals who need it?

13. What was the impetus for this change of heart from OPWDD and for the Acting Commissioner? What was the driving mechanism for this change – was it fiscal? Was it an ideology based solely on the needs of an individual with a developmental disability?

14. Please tell me about FIDA

15. My child uses agencies that are in different DISCOS. The programs are very good for my child. I do not want my child to be pulled out of those programs that he loves and are helpful to him.

16.Why was a new guardianship bill promulgated?

17. My concern is that the deinstitutionalization is a way to cut residences and residence support costs. Not only does it cost less, the burden on the family is untenable. It cannot work long term. As the disabled person ages, so will the family member – what then?

18. What was the impetus for change? Where is the plan for what parents should be doing? Is self-direction a threat to providers?

19. To OPWDD – I was told that PSCH will conglomerate with 70 other agencies. AHRC and YAI will do the same, that means they will have more power to control everything. Consumers will have less choice and will not be able to move. If the consumer is unhappy to live in the residence for many reasons. Why should she be stuck in one place for life? This is abandonment of her human right.

NYC has built 250 buildings for 440,000 people (Public Housing) it should be easy to build for 2,000 people.

20. How many trained coaches are available? Where are they? Do you have 2000 coaches?

21. There are 6400 consumers on residential list, do you have community based integrated housing?

22. Will I be sharing my nursing home with my son?

23. My daughter is 24, a college grad on the Autistic Spectrum. She’s been out of school for a year. I’ve been trying to get her services. OPWDD has approved her now I’m told there are long waiting lists for help – Medicaid Services Coordinators etc. What do we do to get through this unbearable hellish process of shuffling papers? She’s been approved twice. Waiting is all we’ve been doing. My daughter needs life skills, and job support. For how long must she wait?

24. What success can the Commissioner have if the governor is thoroughly disinterested in this population?

25. Guardianship – yearly reports? Really? What is going to change in a year, my son has permanent disabilities. He will never be able to manage his own affairs. No communication with families before introducing bill. Why change what is now working?

26. Placements into residential settings – who decides? What is best fit?

27, We need housing on OPWDD DDRO LAND assorted according to needs. 1.2.3 bedroom apartments in a gated community.

28. We need medical care that’s responsible to our children we have invested into our family to forty?????

29. Can you provide a snapshot of what the Transformation Agenda goals regarding employment of those who are non-verbal, with limited daily living skills, will look like?

30.At the moment if our children go to work competitive employment will lose their medical coverage and OPWDD services they need. Since our children are getting older they now collect Social Security benefits under their parents, then get to keep SSI, Medicaid. If they end up making more money then their parents they lose their DAC/Adult child survivor label. What happens they lose their Medicaid, they have to pay a very large spend down to get Medicaid. Is this a good idea when our children still need their OPWDD services but not cannot pay for them?  (of course this is Debra Greif)